The Perfect Storm

I have been reading this forum since Jan this year and it has helped massively. So grateful that it is here!!

But I kind of put off writing my story, as it seems like a bit of an epic saga. Sorry for the length…

Firstly, I’m a pretty fit 40 yr old non smoker, light drinker and healthy eater. So what I will describe below makes me sound decrepit, but I’m still mostly functioning and keeping active. Most of the time T is not super invasive unless during a spike (like right now) and my hearing is extremely good. No perceivable hearing loss, but I’m 40 city dweller, so of course there’s bound to be some. Especially with the 2 little noise maker kids I have.

Generally I feel my T is getting worse over time, despite efforts to avoid loud places and protect without being OTT about it. My issues go beyond T and I just feel really jaded that no Drs have been able to help me so far, except for, much to my surprise, a Chiro who actually cares.

It started when I was halfway through 12 months of Invisalign, using an acceledent device. The treatment kind of primed my anxiety I suppose. The ortho/hack messed up the “minor” enamel reduction between my lower incisors. Was left with massive gaps which required extra attachments behind teeth to pull all the teeth together. End of treatment left me with a dysfunctional bite i.e. could not bite teeth together at all, plus obviously over slimmed teeth. I have TMJ, but not sure if the bruxism I have had for years caused it, rather than Invisalign.

My actual T began after using ear wax solution for some impacted ear wax. It felt like it went right into my ears, like when you get water in your ear while swimming. I kind of freaked out and tried (previously being a competitive swimmer) to clear it by tipping my head side to side. My ears went numb, then the bi aural 9khz ringing started. Life changed, forever, right then.

An ENT took out the wax and a lot of money. Offered no other input. This guy at a later appointment when I got wax again 6 months later referred me to a psychologist when I said anxiety/panic attacks made the T worse. No offer of MRI or hearing tests.

The first 6 months were a honeymoon introduction to T. Super stable, no spikes, minimally invasive, albeit with a degree of concern about it going away. Felt sure it would be temporary. Was reasonably vigilant about minimising noise exposure, but not excessively so. No sleep issues. I almost miss those months of almost normality, compared with now.

Fast forward to Jan this year. 12 months of Invisalign were up and the results a BIG Fail. Had surgery to remove an abdominal schwanoma and big lipoma on my ribcage under local anaesthesia (v traumatic, especially hearing the laser burning flesh and feeling a slight tugging down my leg when the surgeon was tugging at the schwanoma).

Add in work and relationship stress with no recovery time from surgery. I started getting heart racing, mood swings, anxiety, panic attacks, vision issues, memory problems and chronic insomnia started and made my T ramp up massively. A truly horrific period for me. I even went to the ER thinking I was having a heart attack. I have LBBB in my heart (probably since birth), that has never caused any issues and has no known cause. After some tests confirmed it wasn’t a heart thing, they gave me a few Xanax tablets and wow, that helped massively. My local Dr prescribed me a dozen xanax tablets, which allowed me to low dose for a couple of weeks. It was very effective for anxiety even at 0.125mg and lowered my T too. Still have a few left over just in case. Slowly I got past the anxiety and insomnia on my own.

Just after the surgery I started to get weird muscular/skeletal pains, spasms and nervous system parasthesias around my body. So many kinds it is too much to write here, but could be anything from ALS, MS to Lyme, Diabetes, Fibromyalgia, Parasites etc. Almost anything! Most disconcerting are these random weird cold wet rain drop sensations. Also had mental fog, memory issues, visual floaters, night sweats, weakness and fatigue. To this day I still get most of them, but they come and go so I mostly ignore them. Taking probiotics, vitamin and mineral supplements have definitely cleared the mental fog, fatigue and memory issues at least. And I’m not so anxious anymore, just kind of peed off about everything.

On top of that I have had unexplained weight loss – about 10kg in 5 or 6 months and still slowly dropping.

So I have been trying to find out from the so-called “experts” what is wrong, to no avail, but found out I have:

“Borderline” Chiari Malformation with 3mm herniation. Could be more as the MRI was done whilst laying down. Despite the fact I get many of the symptoms, the Neuro surgeon chalked it up to stress. He said it needs to be 5mm for a diagnosis. Right, whatever.

MRI confirmed Cervical Spondylosis (probably more spinal issues lower down too but MRI didn’t scan there).

Developed severe vertigo a couple of days after the MRI. I truly feel for the Meniere’s sufferers. Was prescribed Betaserc for 3wks, by the hopeless ENT who said I might have “a bit of Menieres”, despite having zero deterioration in hearing. Betaserc was effective, but still often have momentary vertigo and balance wobbles but can deal with it. It had no effect on T whatsoever.

Normal blood test results except for slightly elevated liver cancer markers that seem to be dropping in a recent test.

Had a CT scan of my brain (refused another MRI) that was normal.

The T I have these days is a rollercoaster ride. It is in my head, it’s somatic, very reactive and sometimes, for no reason, I get fleeting T in my ears, like a sudden deafness with high pitch ringing that goes away in a few seconds or minutes. Occasionally there is a bit of pulsatile T, usually at the end of a spike or just to mess with me. H comes with spikes, but seems to calm down.

I get this weird sensation in my left ear after hearing certain sounds. Like a split second after the sound, there’s a physical sensation or movement inside.

Also when I jog, I feel things moving in my ears like there’s something loose, and my T spikes for days afterwards. Same with cycling, and anything else that causes jolts and vibrations.

Sometimes I get varied tones, some higher or lower on top of the normal 9hkz one. Like a fuller T experience instead of monotone.

I think I have ETD as I often get air build up in my ears, as a result of talking, maybe stress and hearing certain sounds. Only yawning or moving my jaw helps a bit equalising pressure. When it happens I can hear my muffled voice in one ear or both. Can’t equalise properly in one ear with Valsalva. Hiccups and burps feel like they go into my ears, as weird as that sounds.

No matter how hard I try to avoid loud situations, I keep experiencing acoustic incidences since Jan, like thunderclaps, a car alarm going off next to me in an underground carpark, noisy car/motorbike brakes and buses venting their air or whatever it is they do. I had water spray in my ear when showering causing a day of ear T in addition to the head T. My luck in life has run out.

I’ve reached a point now where I’m resigned to the fact that I have no control over anything, which helps me not get worked up about it. But if it keeps getting worse, I don’t know what will end up happening. No one is going to help me the other stuff beyond the T too.

I can sleep even though laying down makes it a lot worse. Magnesium is helpful for chilling out and sleep. I often sit outside the back of my house listening to the insects at night, which helps I think. I dream of quitting the city life and living a quiet, stress reduced life somewhere in the country.

Seems to me that unless Drs can neatly place you into a category, you are too much trouble or an irritation. They are either too general or too specialised. It’s so easy to fall between the cracks so to speak. Granted T can’t be cured (yet), but it seems medical science is still in the stone ages in so many respects. The demeanour of many so-called professionals leaves a lot to be desired. They are generally apathetic and seem to be doing what they are doing because of the money and because they have better than average memories for recalling rote learned information.

Anyway, as a past lurker I just wanted to say thanks to this forum for helping me through this tough period in my life.

 

Welcome @Gman to the forum. Many of us are really in the same stage as you, acknowledging there isn't any control much on T as it seems to have its own mind. Instead of giving up or worrying about the future, perhaps live the moment and turn it into a positive one. We need to practice finding joy amid the pain and living life abundantly regardless of T. If we can't do anything much or have any control on T, we may as well be DOING NOTHING for T, and at the same time trying to live and enjoy life again regardless of T. Minimizing the effect of T and Maximizing our life force is my new motto. Doing nothing for T can actually be the turning point in our struggle with T. Don't worry about the future. It is the future and not a reality. Live the moment now. Here are two success stories and they show the importance of adopting this approach to beat the tyranny of T on our life. Take care. God bless.

Doing Nothing works this guy:
https://www.tinnitustalk.com/threads/doing-nothing-worked-for-me.4778/

Making the choice to live and enjoy life regardless of T works for my first mentor Paul Tobey, his story on ATA:
http://www.ata.org/sites/default/files/my_choice_concert_pianist_personal_story_tobey_june_06.pdf