Meniere's or naw?

Hi,
Just joined here and have perused some of the other threads to see if anyone might have the answers I'm looking for but figured it would be easier to just share my experiences and get some feedback from you fine people. For starters I'm not sure that I even have Meniere's. My first ENT I'd been going to for a few years said not but a new one I recently went to for a 2nd opinion said it was on our initial and, so far, only meeting. Some of my symptoms do seem to match but I'm not 100% convinced.

For starters, I've had gradual and steady hearing decline in my right ear since mid-2015. My understanding is that people with Meniere's are supposed to have periods where the hearing initially seems fine again in the early stages? I didn't start having dizzy spells until late 2016 and at first they were simply brief periods of feeling off-balance like I'd had a few drinks and that feeling wouldn't pass unless I laid down and slept it off for about an hour. This was happening once every few months until I had a more severe episode in Sept 2017 where the room felt like it was spinning and I had some nausea but not enough to vomit. I'd attributed all my previous episodes to stress and getting older (turned 40 last summer) and this Sept one to the fact that I was out of town for work, having difficulty sleeping in the hotel bed that week and drank a few cups of coffee (which I almost never drink) the morning of the attack, which started late afternoon of that day about 6 hours later.

The next major episode was in March 2018 when I arrived for work at my usual 8AM and was sitting at my PC answering e-mails for 10 minutes when I got hit with a wave of dizziness and lightheadedness to the point I felt I might pass out. In addition to those symptoms I also got very warm and sweaty for several minutes and then felt very cold and was told by coworkers that I'd turned extremely pale before one of them drove me to the ER. Nothing was found during the ER visit and I was discharged 4 hours later feeling fine aside from some grogginess that lasted the rest of the day which I believe to be a side effect of the Meclizine I'd been given. Two weeks later I started feeling a bit dizzy and took a Meclizine which, again, left me feeling drained and out of it for the next 24 hours. On my short drive to work the following morning, while still affected by the medication, I suddenly found myself feeling very close to passing out. On the drive home at the end of the day I had to pull over after 30 seconds on the road due to an overwhelming feeling of anxiety and spent several minutes catching my breath and waiting for my heart rate to slow down before continuing home.

I've pretty much had extreme anxiety since then (which I had no prior history of) and taking a Xanax an hour before leaving home seems to be the only thing that has kept me functioning and able to go out in the world. Things seemed to be mostly fine until mid Aug 2018 when I started having the severe vertigo attacks with nausea and diarrhea and also vision problems (felt like my eyes may have been jerking back and forth involuntarily) every week for 9 weeks in a row. In every instance the only thing that has seemed to help is to lie down and sleep it off for an hour or so. While my symptoms seemed to have mostly subsided by the time I woke up I was still feeling very tired with a constant feeling of fullness in my right ear and the right side of my head. This wave of weekly dizzy spells was bad enough that I had to take medical leave from my job that entire period and by the time I decided to return to work the episodes seemed to be done and I have now not had one since mid Oct.

Other symptoms that might be worth noting is feeling of fullness/ pressure in my right ear and right side of my head along with the tinnitus which goes back and forth from being a high pitched ring to a dull roar to barely being noticeable at all but when I do notice it it seems to be pulsing in time with my heartbeat. Sensitivity to loud noises in my right ear to the point where it feels like they're cutting right into my brain, affecting my balance. Chest pains, mostly when lying in bed at night and mainly when I rolled over from sleeping on my side down on to my back (this was mainly happening last Summer but hasn't been as much of an issue lately). Irregular heartbeat and sometimes feeling like my heart might stall out on me, mostly during that 9 week period of weekly dizzy spells. Random sensation of my feet sometimes sliding around on me like I'm walking on ice both when I've been standing and when I'm sitting and put my feet up on my coffee table. Random feelings of numbness/ weakness in both my hands. Primarily my most frequent issues lately have been discomfort in the right side of my neck, the problems with my right ear and a sense of being lightheaded in the right side of my head like I'm hovering around the halfway point towards maybe passing out and sometimes edging just a little closer to the brink of it happening.

I've been to multiple doctors since my ER visit last year and I'm being told nothing has been found to connect all these things on the right side of my head and neck to each other. I find it a really strange coincidence, though, that a number of my symptoms have all developed within the same area as each other, especially considering I've been perfectly healthy most of my life preceding all of this. Between two ENT's, a cardiologist and a neurologist the only discovery that's been made is a fluid-filled sac between my right jugular and carotid which I've been told is just a developmental anomaly that can occur when one is a fetus and that it's not related to or the cause of any of my issues, including the on and off stabbing pain in my neck in that same general area. All other imaging tests, studies and bloodwork have come back seemingly fine. The closest thing I've gotten to a diagnosis is Meniere's but I'm not entirely convinced. Needless to say, I'm pretty darn frustrated at this point especially since driving for any length of time and even air travel seem like a risk considering the constant feeling of being faint.

I know this is a lengthy post but if anybody out there has heard of or experienced something similar to what I've described above and received a solid diagnosis, be it Meniere's and/ or something else, I'd really appreciate the input. Another reason I'm skeptical of my "diagnosis" is the dietary restrictions this newer ENT suggested. With the exception of maybe caffeine, which I gave up years ago aside from the coffee I drank that one day of my first severe episode, I can't see any connection between known food and beverage triggers and the dizzy spells that I've had. If one does have Meniere's and they consume something they're advised not to will it cause a dizzy spell right away or is it a reaction that builds up over time? I'm a very consistent person as far as my diet and schedule and I've found no common factors between any of my episodes. Might also be worth noting that there's been a few times I've started feeling dizzy and simply stopped to take some deep, concentrated breaths and it seemed to help keep things from progressing into a full-blown episode. Is that typical for Meniere's sufferers? Okay, I'm done. If you took the time to read all this you're awesome and thank you!

 

The cardiologist only made me wear a 24 hour EKG holster but my neurologist had me do a 3 day study a few weeks prior to that where I wore both EKG and EEG holsters and was monitored via computer and cameras by the company running it 24/7. I actually had a dizzy spell the 2nd night of that study, logged it on my sheet and hit the "Event" button during that and the mornings where I was waking up with the chest pain. According to both specialists nothing abnormal was detected in either case which I was also told by the ER doctor and they did an EKG within minutes of me arriving there. Weird thing is I had an abnormal EKG reading during my first treadmill stress test at the cardiologist's office and was told I had an abnormal reading by my PCP in early 2016 when I was getting cleared for deviated septum surgery but nothing else came of those. Pretty much was told that sometimes abnormal readings are just a normal variation in the heartbeat being picked up? Cardiologist did a nuclear stress test, echocardiogram, ultrasounds of both jugular and carotids and CTA scan of my heart and everything checked out fine aside from a very slight plaque buildup in an artery. Currently he seems to think everything is okay on his end and my next followup is early next year.

 

Yeah, it's in the lower frequencies. I was playing guitar in a cover band in my free time back in 2015 when I started to notice myself struggling to make out the bass player's notes. Initially the first ENT concluded after a clear brain and ear MRI that it was natural hearing loss due to the music playing and the warehouse noises at my job. I've been mindful of protecting my hearing for the last decade or so, though, and even more so since receiving that "diagnosis" yet the hearing loss has still gotten significantly worse and all these other symptoms started popping up with it over the following years.

The 2nd ENT had his assistant give me a pamphlet on Meniere's as I was checking out and the dietary restrictions are just the generic ones that were listed on there like caffeine, chocolate, alcohol, bread and salt. I don't consume large amounts of salt to begin with so I'm iffy about trying the diuretic he prescribed me mainly because it can cause low blood pressure and between the regular feelings of being faint and varying BP readings between all my doctor's appts I'm nervous it might aggravate my situation. I attempted taking a Prednisone about a month ago and spent the following 2 days feeling much more lightheaded than normal.

It is possible the cardiac stuff could be anxiety-related. A majority of those issues have been late at night and first thing in the morning before I've taken my Xanax for the day. I've never heard the term neurotologist before and had to look it up. One website I went to defines an otolaryngologist as a combination of an otologist and a neurotologist so if that's accurate then, yes to your last question, because both ENTs are board-certified otolaryngologists.