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Hi Everyone. My first post: dizzy and tired for two years.

First of all, a confession: I haven’t been diagnosed with MAV, VM or PPPD so what am I doing here? Read on and all will be revealed!

My story begins in May 2018 when I awoke very early one morning to find the room spinning violently. This came as a complete shock. I was a fit 68 year-old, in good health, hadn’t been drinking and had no history of dizziness. The initial diagnosis was a middle ear infection. I was prescribed Prochlorperazine and told it would clear up in three weeks. But it didn’t. Three months later I was still having dizzy spells, bouts of brain fog and felt sick much of the time. Coincidentally, the day I was changing to another GP, I also had what is best described as a “visual disturbance”, a bit like seeing stars lasting for an hour or so but with no other new symptoms. Given that this might have been a side-effect of the Prochlorperazine, my new doctor changed my medication to Betahistine and told me to return if there was no change in my overall condition. There wasn’t so back I went. (October 2018). This time, I was referred to a specialist who said I had either BPPV or an acoustic neuroma and sent me for a scan to rule out the latter.

And this marks the start of an extremely frustrating period when it took some 3-4 months before I got the results of the scan (very long story). The gentleman who gave me the results, not my regular doctor, confirmed the diagnosis as BPPV without examining me and doubled my medication. However, the consultation was very unsatisfactory for a number of reasons not least of which was that the doctor (not a specialist as I later learned) was unable to answer any of my questions satisfactorily.

At the insistence of my wife I subsequently went to see an otolaryngologist privately. Talk about restoring my faith in the medical profession! Following an extremely thorough examination, including the Dix-Hallpike test, he announced that I didn’t have BPPV but that the initial bout of vertigo was caused by acute labyrinthitis and my brain hadn’t compensated hence the ongoing dizziness and nausea. He also explained why my symptoms were worse in supermarkets and shopping malls (brain overload). He then arranged for an extensive series of tests which showed a good response from my vestibular system and no nerve damage (September 2019).

On a daily basis, I still get varying degrees of dizziness, brain fog, tinnitus and nausea although the Betahistine seems to work well in combating the latter two. By far the worst, though, is what I call “dizzi-tired”: a sudden and debilitating rush of dizziness and tiredness occurring at the same time usually brought on in supermarkets, shops or anywhere with harsh fluorescent lighting. Noisy crowds are another trigger. The after-effects of tiredness, brain fog and generally feeling unwell, can last for several days. The best cure I’ve found is simply to avoid these situations altogether although, more recently, I have found FL-41 lenses helpful when out shopping.

I also follow an active exercise regime including Cawthorne-Cooksey (×3 daily), swimming (Covid permitting), walking, cycling and Qigong. This regime hasn’t cured me but at least I’m not getting any worse (touch wood).

So why MVertigo? Well, my otolaryngologist suspects there might be a “migrainous element” to my condition. Indeed, I can certainly relate to a number of the posts on the forum particularly those involving light and sound sensitivity although many of these are far more severe than mine. At any rate, its reassuring to know there are others in the same boat as it were. And hopefully I can learn from other people’s experiences to improve my own (and vice-versa).

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Welcome the forum.

We welcome anyone here with chronic dizziness. So don’t worry about your specific diagnosis.

Were it not the fact the mvertigo ‘brand’ is now well known, I would have renamed it a long time ago. I may get around to a full rebrand at some point in any case.

There are plenty of people who have trauma induced dizziness, anxiety lead etc so no need to get too specific. All that matters is we share symptoms and solutions. :).

We do seem to attract a lot of users with PPPD and a lot of people with chronic vestibular issues who don’t have obvious migraines.

Equally migraine is a very common theme. We welcome everyone suffering a vestibular problem.

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Hi John and welcome to all the others in the same, somewhat rocking, boat, eh. A ‘migraineous element’.join the club I got one of those too. Bet you are in the UK where the specialists always love to avoid actually committing to a diagnosis. I have also had a ‘Probable’ migraine DX too. You certainly sound much like most of us so don’t concern yourself you mightn’t qualify. You are in. Sounds like me you pretty much got it as sorted as us possible. Btw there is no cure for migraine type things just. If you are lucky, some control. Trigger Avoidance is regularly prescribed I have had to practise it for years because certain environments quickly made me do I’ll however bad news is eventually our sensitised brains become even more sensitive due to avoidance. Turns out it was only habituation that was allowing us to cope with supermarkets etc in the first place. I make the point because I suffer the consequences of avoidance but unfortunately I don’t have the answer to … Er… Avoiding the Avoidance Strategy in the first place if you follow. I went four years and never stepped in a supermarket or shopping mall.

Out of interest, The Cawthorne exercises might I ask. Were they prescribed and if so by which specialist you saw.

When you were given the migraineous element DX. Did they not suggest a change of medication. Betshistine isn’t commonly used to treat MAV. It’s a Menieres drug. There are many more commonly used drugs available to treat MAV and indeed migraine. Amitriptyline is very useful for Supermarket Syndrome which is what’s usually called Visual Vertigo.

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Hi Turnitaround & Onandon03, Many thanks for your welcoming comments! I’ve been reading your posts for quite a while now all of which I’ve found very informative so it’s good to “meet you” both, so as to speak.

Re Onandon’s query about Cawthorne Cooksey exercises, these were prescribed by my otolaryngologist, Gareth Rowlands, who is based in in Stoke-on-Trent. Unfortunately, there is no support for these exercises. I was given a link to a pdf file on an NHS website and left to get on with it! However, I’ve found a number of other sites describing almost identical exercises under the more general heading of “vestibular rehabilitation therapy”.

Quite how effective these exercises are is hard to say. When I first started, I began to feel better right away. I still had the dizziness etc. but the general feeling of being unwell (the “yuk” if you like) began to recede. Perhaps more to the point, I haven’t had any true vertigo (as opposed to dizziness) since last year.

Mr Rowlands referred me to a local hospital for the tests I mentioned in my post (I remember them for the “waterboarding”). The person who carried out the tests also recommended gaze stabilisation exercises. Again, I’ve found the same thing online under the heading of VRT.

Re the Betahistine, Mr Rowlands’ full diagnosis was “… consistent with ongoing incomplete compensation following … acute labyrinthitis or possibly vestibular neuritis”. No mention was made of Menieres or MAV. The reference to migraine was made in the report I received after a second consultation. I don’t recall us discussing it during the consultation itself. I was due to go back and see him again earlier this year but then Covid struck and sadly people with far more serious problems than mine haven’t been able to get treatment so I guess I’ll just have to wait.

Finally, regarding my location, you’re right! I live in Staffordshire.

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Hi, I was the same - had been reading a lot on here before getting on board. Welcome.

The supermarket and shopping malls are bad aren’t they. Can’t wait for my glasses to arrive. I went today to do some much needed present shopping (both of my daughters birthdays fall just before and just after Christmas) and I felt horrible in there!

Wow you are so good at keeping at your exercise regime. You are very active. Do you find that makes your symptoms subside a bit? I feel I need to do more. I’m trying to ‘rest’ and de-stress but at the same time I don’t want to shock my system when I do start getting on with life.

Interesting that you get tired when dizzy. I found - pre MAV when I just had the good old fashioned migraine kind - that I yawned a lot before it started to set in. I think it’s typical.

Well good luck John, hoping you feel better soon,

John. Good to meet you too. Pleased you felt able to join us. UK particularly outside the Capital and Home Counties is very poorly served for dealing with balance disorders generally. I was very surprised you found an otolaryngologist in the Midlands. Even rarer than neuro-otologists I’d hazard. Case management doesn’t exist. One gets left to DIY. There’s a Clinic in Leicester I believe and Sheffield but that’s it away from the capital. Cawthorne Cooksley were the original VRT exercises from the 1940’s and do include gaze stabilisation exercises. Glad they have helped you. You can extend/personalise them yourself. Lucy Yardley of Southampton University wrote a booklet for the Menieres Society contain the exercises plus. I looked out a printout I made years ago. You can find it in the Menieres.org.uk website under self-help for dizziness. I cannot post you a direct link currently as too many of my devices are away for repair but I checked it out and it’s still there. If you have already had success with them could prove worth a try.

Hi Belindy, Nice to hear from you. I’d be interested to hear how you get on with the glasses. I’ve only been able to test mine out on a few occasions because of Covid-19 restrictions - I don’t go out shopping much! However, early indications are encouraging so I hope they work for you.

Re my exercise regime, I’ve recently found that long, fast walks have the greatest impact on my symptoms. They seem to help with the dizziness and provided I go fast enough I get an endorphin release as well. There is a very interesting forum post by Turnitaround about walking which you might find helpful. I find the exercise regime overall makes me feel better and gives me the energy to deal with my symptoms.

The tiredness I get comes in two forms. There is what I call “head tired” when the brain fog is heavy and I just want to sleep. This can happen at any time. Then there is “dizzy-tired” which is usually triggered by fluorescent lighting, supermarkets or loud noise. This is a sudden rush of dizziness and tiredness at the same time and is accompanied by mental confusion. These are the worst and it can take days to recover completely. Fortunately, the FL-41’S do seem to be helping.

With exercise, it’s often a good idea to start off slowly and gradually work up, maybe an occasional gentle walk might help? Sue Hickey has written a book called “Finding Balance” in which she describes how she dealt with the stress of dealing with multiple vestibular disorders. It’s very much about her own personal journey and has mixed reviews on Amazon but it makes some interesting points.

Well, I’ve gone on long enough and my phone needs recharging! Do let me know how get on with the glasses.

Regards
John

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I found that book a bit rubbish tbh. Rambling and lacking in conclusion (but probably that was part of her truth).

I suspect she had one underlying vestibular issue, which simply didn’t resolve for the duration of the book at least. I’m not at all convinced she needed any operation, let alone several. I don’t think there is any certain evidence she had a PLF and there is no proof that PLFs don’t heal spontaneously? Why would the body be so weak? I don’t think it’s that weak.

And even if your PLF has healed, that doesn’t mean your vestibular issues are magically resolved, because I suspect a PLF, if one existed sets you up for a long period of inner ear fluid imbalance (hydrops) which probably takes years and years to resolve because inner ear fluids balance apparently only very slowly (indeed!).

You will note the striking similarity between the symptoms of MAV and the symptoms of PLF. You will also note the striking similarity between the treatment regimes - drug treatment of PLF fallout is the same as for MAV.

PLF was dogma at the time. The current dogma is migraine. Perhaps the new emerging one is PPPD. I suspect all are far from the full story. Not enough attention is paid to the complex physiology of the inner ear imho and what can go wrong with it. We basically don’t know how it regulates itself and what happens to it when things go wrong with bodily processes that it depends on for perfect function. It may be that migraine interferes with it too so there is a negative feedback loop.

Having apparently partially but significantly recovered from a suspected PLF myself (whilst also being told by other doctors I had MAV and, separately, hydrops!) I can only say don’t bother with any surgery, give it time!

That said we have had a couple of people on here that have had PLF surgery and one of them found it very beneficial. If everyone recovers anyway from those kinds of injuries, then perhaps some of the operations are placebo. At worst they may extend your misery though. One needs to give it very careful consideration indeed!

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An interesting review!

As I said in my post, the book received mixed reviews on Amazon. One reviewer described it as very helpful, another found it “rather boring” but, hey, we’re all different! Personally, I have yet to finish the book as the author doesn’t have a great deal to say about what I was looking for. However, that doesn’t mean to say it’s without merit. Much of it is to do with how she dealt with the ongoing stresses of her condition and the impact on her personal and working life. As such, anyone experiencing similar difficulties may find her observations helpful.

To be honest, I wasn’t too bothered about the precise nature of her condition. I was more interested in what she had to say about VRT (not a lot) although I did find her comments about how she coped with what was initially a puzzling vestibular disorder very illuminating. My approach has been to take what’s useful from the book and quickly scan over the rest. I find this strategy works well for many publications.

Interesting discussion!

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As a diary of a fellow vestibular sufferer, it’s ok, but raising that to the level of a sold book, you’d hope there was more useful things to get out of it than a medical soap opera?

Also her story may have a happy ending, but the book was published in the middle of her symptoms which seems to leave out a crucial stage, an ending?

Hi Helen,
Thanks very much for the info and the link to Menieres. I knew about the Leicester clinic but not about Sheffield. As you may know, the former is run by Professor Peter Rea who gave a very informative online presentation as part of Veda’s Balance Awareness Week back in September which you may have seen. I’ve been regarding the Leicester clinic as my plan B in case the local option doesn’t work out. At the moment, though, I don’t much fancy visiting any hospitals especially around here where Covid cases are much higher than national levels! Besides, the NHS has really got its work cut out right now.

I have to say that I’ve been very surprised by the response to my initial post, I wasn’t expecting such a warm welcome or an in-depth literary discussion so soon!! However, it’s all very heartening and knowing that there are plenty of other fellow sufferers out there willing to share experiences is reassuring.

Thanks again for the info and keep well.

John

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I didn’t see Prof Rea’s presentation but he is well respected in his field. I did know he was at Leicester but had since forgotten😄. If you Search his name on this site you will find references. I think particularly of an article on Visual Snow if memory serves but sure there are others. Wouldn’t imagine you could better where you are at present even allowing for Covid. I’d stick with it.