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.