Hi,
I just wanted to introduce myself, Iāve been a lurker on here for many years, and occasionally look in when things have taken a downward turn. Iāve had issues dating back 23 years, and found some respite but I find myself back the same horrible place and Iām 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 āLabyrithitis, will clear up in a few weeksāā¦ 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 (itās Labyrinthitis, no itās not- itās gone on too long for that, so itās MS, MRIs clear so itās 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 Iād 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 didnāt 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 Iād 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 werenāt that bad but too much stimuli or if I overdid it I felt pretty rough for a few daysā¦ 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 theyād leave it open, and for me to call them when Iād 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 wouldnātā¦ so that was the end of thatā¦ 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 (Iād 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 Iād last been in London one of the drs mentioned that if I didnāt 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 didnāt 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 āepisodesā which occured every couple of months seemed to almost disappear or at least only last a few hours and wouldnāt take long to recover from.
Now, I wasnāt 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 wouldnāt get enjoyment out of certain activities) life was fairly close to ānormalā. 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 thoseā¦ 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 Iād 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 Iām drifting to the left, whilst walking, although I objectively look fine, my balance is all over the place. Iāve 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 canāt get to the point where Iām so disorientated I canāt function - well thatās not true anymore). Itās gotten into that same pattern of slowly improving then reverting. It seems as part of this latest episode Iām pretty reliant on vision for balance all round, so supermarkets are back to being a nightmare (even though Iāve taken to trying to go everyday to try and get my brain to adjust, even if that means some days Iām 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 Iām back to the jangly eyes and woozy head. Itās conceivable that itās BPPV causing decompensation/migraine flaire up, but it doesnāt last āsecondsā like BPPV would, but then I guess if youāve 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 itās normal level a few hours later.
Similarly, Iāve 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 thatās a coincidence, but since then Iāve 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 āHow am I feeling?ā, and any minor dizziness that day getās blamed on the noise). Iāve 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 itās easy to start looking for a meaning in everything where there might not be oneā¦
Anyway, I totally digress, the reason for this post is to say hi, tell my storyā¦ and hopefully get some info or ideas on what to do nextā¦ Iāve been looking at getting private referral to specialist, but there none locally, and itās an 18month wait on the NHS, Iāve found a guy āOwen Juddā in Derby or āPeter Reaā Leicester, does anyone have experience of these guys?