Return to chronic symptoms

Hi,

I just wanted to introduce myself, I’ve been a lurker on here for many years, and occasionally look in when things have taken a downward turn. I’ve had issues dating back 23 years, and found some respite but I find myself back the same horrible place and I’m on the hunt for answers again. Some names and people on here are familiar from forums I spent time on way back.

Anyway, in 1999 I had a few days of feeling really odd and off balance, and my vision became unusual, that progressed into full on vertigo. Initially I tried to write it off, as I had, had some episodes of panic attacks a few years prior (the main symptom of which was feeling like I was going to fall over - which in hindsight is possibly related). But this was so much more with world spinning and twisting as I walked, so I went to see my GP, he said “Labyrithitis, will clear up in a few weeks”… It never did, and over the next few months life was pretty shit, but I finally found some good information online, and set about VRT and trying to encourage my brain to compensate, and although improved I was still pretty limited and had constant subjective symptoms (objectively my balance was great). I saw a few ENTs which was a waste of time (it’s Labyrinthitis, no it’s not- it’s gone on too long for that, so it’s MS, MRIs clear so it’s all in your head, good bye). Eventually after much pushing I got a referal to Linda Luxon at Queens Square, loads of tests, most of which came back inconclusive, so I was then diagnosed with Peripheral Vestibular Dysfunction with failure to compensate in 2001. So they got me on a VRT course (complete waste of time as I’d bought books and had been doing VRT for 2 years by then anyway, and certainly never limited my exposure to motion/stimuli), but also got me to undertake CBT because I had developed panic and anxiety issues alongside the balance problems, and they believed that is what may have been slowing down my progress. The CBT didn’t really make me feel physically any better, but it did massively help me deal with my symptoms and manage them better. Over years my symptoms settled into a pattern of slow improvement (over a few weeks) to be only motion/
environmentally provoked symptoms, then out of nowhere every few months a massive blip and back to the start - sometimes the blip came in the form of actual non-montion provoked (mild) vertigo that would last for a several hours to day then I’d revert to baseline, other times it was a return to greater motion/visually provoked symptoms (often so that walking became problematic) and it would take weeks of gradual improvement to get back to my baseline level, and then a couple of weeks later it would start over. Inbetween the blips my motion provoked symptoms weren’t that bad but too much stimuli or if I overdid it I felt pretty rough for a few days… Unfortunately at the last appointment I had with the docs in London they said there was no need to make a follow-up appointment, and they’d leave it open, and for me to call them when I’d finished the CBT course, but by the time I had finished the course the open appointment had expired, so needed re-refering, and my GP wouldn’t… so that was the end of that… Not long after, I fell and fractured a vertebrae in my lower spine, so I decided to focus on getting back sorted because getting answers to the dizziness seemed futile (I’d gotten used to zombie life), which improved over the next few years, but Dizziness remained the same. I then had a really bad run with my Dizziness 4 years later in 2009, where I was constantly feeling like I was pulled around and my balance was pretty awful, so I wanted to set about getting re-referred. When I’d last been in London one of the drs mentioned that if I didn’t improve after VRT they might trial me on some migraine medication, so when my GP was reluctant to re-refer me I suggested trialing migraine meds, she agreed. First Propanolol (felt like I was going pass out all the time), then Amitriptyline, which didn’t do a lot at first, but over a couple of months, I found I was able to do more and more and my symptoms less bothersome, even better those “episodes” which occured every couple of months seemed to almost disappear or at least only last a few hours and wouldn’t take long to recover from.

Now, I wasn’t cured, but I could pretty much do anything and everything (trips to Africa, travelling around Italy, even a surf trip to Sri Lanka!), it had gone from being a life changing problem, to being a nuisance, also I became so much better at dealing with it. Symptoms became quite predictable which meant they were easier to manage, and although I still had to limit what I did (and wouldn’t get enjoyment out of certain activities) life was fairly close to “normal”. 7 years later (2016 - when going through a stressful life event) symptoms re-emerged and took a couple of months to reduce to their previous level.

Was it ever MAV, VN, or even PPPD following one of those… who knows?? But Ami helped so much, I was just happy to be functional. As an aside for a couple of years I changed from Ami to Nori, which seemed just as effective, and I liked not being as drowsy, but Nori turned me into a emotionless robot so I reverted to Ami, and been on it ever since.

Which brings me to my latest episode - one night on holiday, in August, I jumped up to tell my teenage sons to turn their crazily loud music down, and I suddenly felt that old familiar buzzing sensation in my head, and my eyes kept wanting to not focus. Occasionally I’d get the odd blip like this (but not as severe) so tried to write it off, but since then my symptoms have been up and down. Some days I feel like I’m drifting to the left, whilst walking, although I objectively look fine, my balance is all over the place. I’ve also experienced a few episodes of complete disorientation (one whilst driving, the other whilst I was in the sea) - which has completely undermined my confidence (my trick whenever I start feeling bad and out doing something was to remind myself it can’t get to the point where I’m so disorientated I can’t function - well that’s not true anymore). It’s gotten into that same pattern of slowly improving then reverting. It seems as part of this latest episode I’m pretty reliant on vision for balance all round, so supermarkets are back to being a nightmare (even though I’ve taken to trying to go everyday to try and get my brain to adjust, even if that means some days I’m clinging onto a trolley to keep upright).

There are a couple of things which seem different this time, it seems like there is a positional component, in that I can be having a good day, then look up, or jump up out of bed, and I’m back to the jangly eyes and woozy head. It’s conceivable that it’s BPPV causing decompensation/migraine flaire up, but it doesn’t last “seconds” like BPPV would, but then I guess if you’ve already compensated for damage (caused by MAV/VN) then it would make sense that BPPV could wreak havoc with that compensation. I will say that even during my good years, I would occasionally find my dizziness would be stirred from looking up for prolonged periods (painting a ceiling for example) but it would be back to it’s normal level a few hours later.

Similarly, I’ve noticed that on occasion loud noises seem to set me off - but that could be a complete red-herring. My flaire-up in 2009 was precipitated by a rather daft idea I had of going to a concert and maybe that’s a coincidence, but since then I’ve noticed on a few occasions (even during the good years) that extreme noises (cathedral organ, dog barking in my ear, car alarms) seem to make me dizzy, however, I would happily concede that may in part be a psychological reaction (in terms of when it happens I instantly check “How am I feeling?”, and any minor dizziness that day get’s blamed on the noise). I’ve also noticed that if I go to the gym, the next day is invariably a bad day, the gym does provoke my symptoms a bit (and I feel woozy and off balance afterwards), but the next day the floating and drifting sensations start. Again, probably a red herring - I think it’s easy to start looking for a meaning in everything where there might not be one…

Anyway, I totally digress, the reason for this post is to say hi, tell my story… and hopefully get some info or ideas on what to do next… I’ve been looking at getting private referral to specialist, but there none locally, and it’s an 18month wait on the NHS, I’ve found a guy “Owen Judd” in Derby or “Peter Rea” Leicester, does anyone have experience of these guys?

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Is that an NHS referral for ENT or Neurology. I’m in a similar neck of the woods to you geographically speaking. I saw NHS Neurology after a 6 month wait including brain MRI and nerve conduction tests. ENT was quicker as by this point I been suffering pretty horrendous symptoms since April. I wanted to get a second opinion and check if it was ear related.

My GP got me an expedited referral and I got in pretty quickly. I’ve looked back at old posts and there seems to be a lot of good specialists in London, if you’re prepared to travel.

Thanks. I’m actually in the South west but weirdly no specialist I can find around here. My original referal to London was on NHS, but it took about a year to get there, and that was only because my then gp was peed off with local ents so referred me out of spite. Now I’d have to go local first… so I’m going to pay private this time round, beats waiting a year and having to jump through several hoops of well meaning but lacking in knowledge ents and neuros… maybe things have changed, but it wasn’t a nice experience, or one I’d like to repeat.

I know from my thyroid forum that a lot of consults are still being done via Zoom, so maybe distance is no object. I havent seen anyone privately but hopefully someone might be able to advise you.

If you’re thinking its migraine related vertigo or MAV the Migraine Trust has a list of specialist migraine clinics, a lot based down south. Headache clinics - The Migraine Trust. Might be a starting point.

I would just like to add that Meneire’s Disease is a rare disease with less than one person per one thousand or 0.001, or less than 0.1 percent of people in the general population. This compares with Vestibular Migraine which estimated to be 80 to 100 times more prevalent than Meniere’s. The problem lies in that VM is underdiagnosed for various reasons the primary one being that the symptoms belong in the realm of Nuerology and Otolaryngololgy ( ENT). Specialist tend to focus on their own specialty and do not extend their evaluations and treatments outside of their boundaries.This fact combined with their bias toward focusing on diseases that lend themselves to a surgical treatment results in the underdiagnosis of VM. There is little time available to spend on teasing out historical details and nuances by these surgical specialists. Unless the patient finds an ent or nuero doctor who has a special interest in teaching or treating VM patients, frequently it ends up being unrecognised or undertreated. There are specialist who are trained in both specialties but these are hard to find outside academic centers they are NueroOtologists.
In one study reportedly done across the this country’s dizziness centers they discovered that of the only 2% of patients given the diagnosis of VM by ents or pcps, more than 20% were later found to have VM. In other words if was underdiagnosed by ent and pcp doctors and others by a factor of 90% of the time!
The point being is that a we must really work hard to find doctors who are not only aware of VM but interested in evaluating and treating it. I recommend start with a NuerOtologist if you are dealing with severe Vestibular symptoms that are not the more common causes vertigo and dizziness. Then go to a Nuerologist if you are given VM as your diagnosis.

I just wanted to follow up on this, I visited Prof Rea in Leicester, seems like a nice chap. His pet diagnosis seems to be PPPD - so I came away from my first visit with a possible diagnosis of Migraine, PPPD and vestibulopathy. That was pending another round of testing and MRIs. The good news is that the MRI was clear, I completed the testing earlier this week and the VNG shows a significant right sided caloric weakness (the opposite of what the National Hospital tests showed 2 decades ago - however that result was within the 20% error margin for the test, so was deemed not clinically signifcant). It also showed a left sided high-frequency hearing loss which I don’t believe was seen previously (but might be an inconsequential finding in the general population my age).

On follow-up with Prof Rea, he seemed very excited to tell me that I do have a vestibular disorder and he now has proof with the VNG result - like I’ve not known that for 23 years!. He couldn’t really offer any explanation for why it now shows a right sided weakness when the National Hospital tests didn’t other than technology has improved (the old tests were ENG rather than VNG - but I also had rotation chair testing), or as I’ve aged the injured side has degraded quicker, or that this latest episode may actually be another bout of Vestibular neuronitis!!

I was rather shocked by this, because my tests have always been within normal ranges. Based on this, he’s diagnosed me with PPPD (aka peripheral vestibular lesion with failure to compensate complicated by anxiety). One of the frustrations of having something going on so long, means that taking a history is a long and complicated affair, and I’m not convinced I relayed everything correctly. Whilst not explicitly saying so, I think he’s thinking that migraine might not be a primary component in my case. I have seen an online video of him discussing the relationship between “migraine brain” and pppd, and how the two are linked (and how migraine can pre-dispose you to having PPPD after a vestibular insult), he cryptically said “well, you don’t meet International Headache Society criteria for migraine”. Whether that was him saying it wasn’t migraine, or just simply “it’s complicated” - I’m not sure.

What bothers me about it, is that it put’s me squarely back to where I was 20 years ago (it wasn’t called PPPD then) and whilst I certainly showed all the symptoms of PPPD it always seemed like there was an active process changing the landscape stopping me from compensating and recovering. With the combination CBT and VRT the PPPD symptoms improved, so much so the anxiety component is not longer an issue for me - other than when I’m really dizzy, but that feels (to me at least) like it’s more a justified and appropriate amount of concern for feeling imbalanced and spinny. Despite that aspect being under control, periodically I’d get episodes of worsening vertigo and imbalance, that would slowly improve over a few weeks, but just as I’d get back to baseline, the whole process would start again - and repeat, VRT would help me recover after each episode, but it always seemed more than the waxing and waning of symptoms. Which is why I started on Ami, and within months those episodes became infrequent and far less severe, and over a year or so my baseline level massively improved also. Which is why migraine (in some form or another), was seen as playing some part…

So it feels all a bit like groundhog day, as I’m now essentially diagnosed with what I was diagnosed with by the National Hospital in London in 2001, for which I underwent the treatment, and didn’t get better UNTIL it was also treated as migraine so I am somewhat dubious about the new diagnosis. Not helped by me witnessing two other people in the waiting room going in to see him, and coming out with PPPD diagnosis’. During taking the history it did seem like he picked up on some of the PPPD like symptoms and hone in on those with further questions even though they are in the dim and distant past, almost like confirmation bias. Not that I don’t believe PPPD exists (certainly, there is elements of that for me), it’s just how much is PPPD and how much is something else causing my symptoms to flare up. Ultimately, the new(old) diagnosis offers no explanation for why six months ago I suddenly got vertigo and all my balance problems kicked off again, and although I’ve had similar episodes in the past, none quite so severe or long lasting, nor does it explain why I had great improvement on Ami in the first place. BUT he is undoubtedly one of the UKs leading experts, so Im certainly in no place to question him.

However, his treatment plan is to switch out ami for Venlofaxine and undertake a course of VRT which I’ve obviously done in the past - but I guess times have moved on, and doing it under the eye of an experienced physio can’t be a bad thing (rather than sparse books and articles I found online!), so I’m happy to give that a try. The one consolation is that a quick google reveals Venlofaxine has been used with great success at treating VM also. I honestly don’t care what label is put on it, as long as I feel better, and if he’s correct that it is PPPD and his “90% of PPPD patients recover after the meds and VRT” statement proves true, then that would be wonderful. So I’m going to throw myself into this, and see what happens… If it works then, PPPD may have been my issue all along, if not then that’s another Med off list.

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The anatomy and its interdependence is both incredible complex and also very sensitive.

I have a significant suspicion that something very simple happened to me which caused me > 3 years of imbalance and the rest of the MAV shooting match.

The sad reality is the science hasn’t yet understood the entire system, its vulnerabilities and its interdependencies and the symptoms you get don’t really help a lot with working out exactly what went wrong it seems.

But sure, most people get better and I would not get hung up on the whole “damaged” thing, it could be just a passing lack of calibration due to some minor upset.

Bear in mind compensation requires a stable system and if the upset is not stable for a while, you won’t easily be able to compensate. That drives the brain mad, hence the drugs.

But bear with it, it should settle down and you’ll be fine!

I’ve seen PPPD described in medical papers as atypical migraine or on the spectrum of otologic migraine disorders. I’ve strongly felt my symptoms were more PPPD than VM, but I also get regular migraines so who knows?
Mine was certainly not stress or anxiety related, which makes me a little sceptical, as all the literature I’ve seen, and I’ve read it exhaustively says PPPD is strongly related to anxiety, introversion and depressive tendencies. So its the old anxiety cop out from medics.

I tried VRT for months and it made naff all difference. Surely PPPD should have responded, however if mine was untreated ,uncontrolled MAV then it might explain my lack of progress. I’ve got to the stage where the label now matters less than the treatment.

I’m now on Venlafaxine as I tried and failed 6 MAV and PPPD drugs before this one. I reasoned that SNRI’s are used for both conditions, if indeed they are two seperate entities. So I’m covering my bases. If I continue to make progress then I’ll give the VRT a go. I do practice balance exercises at home but not doing all that head shaking right now

I’m not concerned about the “damage” label really… it was just surprising that nobody ever saw it before. I’ve always come to terms with the fact that there was somesort of permenant insult to the system (whether the tests showed it or not) - just on the basis that even in my best periods I could still easily illicit dizziness through quick head motions etc, but that was always one of the easier symptoms to ignore. I guess the niggle is whether the difference in tests results 20 years ago vs now represents some kind of destructive process and ultimately it may explain why I haven’t compensated fully.

I agree, the “what went wrong” - would be somewhat irrelevant… Unless whatever it is that went wrong, keeps going wrong, and I guess that’s always been the concern - and why it was such a relief that Ami gave me a life back, because it added credence that it was Migraine and was now “managed”. But now… it’s all up in the air again…

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Imho (just a theory) migraine is a state to which the brain is escalated to when sufficiently “irritated” by a lack of stability in attempting to correlate related stimuli (whose correlations alter too much). This explains why, for example, malfunctioning ears (such as those suffering from Menieres or PLF) cause the host to experience migraines. I also suspect it doesn’t require anywhere near as much disruption as that. Hence why ‘MAVers’ don’t experience degradation in facility long term.

In other words it’s not about a “lesion”, which can be compensated for, but an unstable “lesion”.

It’s a complex control system basically that isn’t stable.

Recovery then is surely about:

  1. Achieving stability AND/OR
  2. Taking drugs to avoid migraine escalation (and raise the instability tolerance level)

An unstable lesion might be as simple as a eustachian tube that gets inflamed.

I guess the problem is that all these “syndromes” describe a set of symptoms without any objective diagnostic criteria. So taking PPPD for example, some people might simply have an uncompensated vestibular deficit, others will have that but it’s complicated by anxiety, but others still, will have compensated but in an inappropriate way (with visual dependency). It also doesn’t identify any causitive factor - does having migraine pre-dispose you to inappropriate compensation? Christ, we don’t even know what migraine truely is other than some sort of “hyper-sensitive brain”.

If you’ve not watched it yet, I did find this interesting:

https://www.youtube.com/watch?v=01tv52Fq_cI

Professor Rea discussing PPPD and migraine, he kind of touches on links. There is quite a bit about BPPV and Menieres to skip through at the start.

In my case anxiety did play a major role, and it was often hard to draw a line between anxiety and vertigo as they end up blurred into one (a vicious circle), obviously the vertigo came first, but the anxiety made me feel more dizzy and feeling anxious makes the vertigo worse and so on. However, when I did CBT that totally disconnected the two (15 years ago), and it’s no longer an issue for me. Prof Rea did go to great lengths to point out that the real purpose of the PPPD label is simply that without a name he techincally isn’t allowed to treat it, which is why they came up with this classification, and that it’s a term for describing a physiological disorder which can result in psychological response. He said that Migraine, Vestibular insult and anxiety are the classic triad for PPPD. But I too have read articles trying to link it to “introversion” - but my take on that is that it’s an over simplification, and an easy get out clause.

I will say my experience with VRT years ago was positive - in that after doing it for months it allowed me to do more without provoking symptoms, my issue was always that movement provoked symptoms were easier to deal with than the non-motion provoked symptoms anyway. Which is where it didn’t make sense to me : if you feel rubbish sitting still in a chair, then training your brain to adapt to motion better is of zero benefit. However, whenever I had a bad run and started to recover I’d whip out the VRT exercises to help clear up those motion provoked symptoms, but if I was feeling rubbish no amount of head shaking is going to help… So I’m totally with you on that… which is why this VRT treatment seems a cop out.

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I guess I’m a bit luckier in that respect, my symptoms literally happened overnight, one day a migraine which I’d been experiencing far more regularly than previously.

My migraine history is sporadic dating back to my teens. The next day around lunchtime i was walking home, which I do frequently, I walk a lot. I went to the supermarket and noticed i was feeling really off, like I was walking on marshmallows. It was a vague kind of imbalance, not feeling quite myself. I thought it was maybe a residue of the migraine. Sometimes i have head pressure and sensitivity when bending down for a couple of days, even when the migraine has gone. I was a bit puzzled but not concerned, I thought a good night’s sleep would resolve it.

Unfortunately that never happened and nearly 10 months later I’m still unbalanced. In the early days I had brain fog, fatigue, nose and sinus pressure and even sitting down could make me feel like I was lurching off to the left.

Most of those symptoms have abated and my remaining issues are sensitivity to bright lights, especially flashing ones, fast moving screens make me uncomfortable. My symptoms seem better outside, worse inside and busy environments like shops can be an issue. Neck pain is an issue at times as well.

I only have imbalance on walking or turning round. When I’m sitting I’m fine and lying down has never ever been an issue. Its like I’ve become hypersensitive to my own movement, as though the filter has got switched off. And I have become hypervigilant to symptoms.

Although not anxious before this started I freely admit to being anxious since. Did that prevent compensation and cause whatever it is to perpetuate? Or is it in fact a physical issue that needs to heal? Who knows?

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