I fell off a cliff in 2016, and landed on my head on a rock. (It literally sounded like a coconut being bonked, exactly the same as when someone hits their head in a cartoon. I had no idea that was a legit sound effect!) I broke several bones, which were not diagnosed because I was in Thailand on a remote island and the doctor there were working with limited knowledge. It was over a month before I found out that I had broken my shoulder, ribs and ankle. However, by that time no one (including me) thought to look at my head. I have had many concussions, because I used to ride horses competitively (and fall off of them a lot), so I had already done my own "concussion" check after I fell, and assumed it was "just another mild concussion" that I would get over, and it seemed like I did.
A couple months later, I noticed tinnitus worsening, beginning on the left side, which was the side that landed on the rock. I think most people have moments of tinnitus from time to time, so it wasn't the first time, and it wasn't an unfamiliar sound, so I didn't panic. However, that began a long, slow, arduous decline in my condition.
Now, nearly 4 years later, the tinnitus has spread to both ears, with a cacophony of sound that is indescribable and insane. Multiple tones in many frequencies with mostly ringing, humming and buzzing qualities, but also chirps, and disorienting sensations like my head is an old TV set and someone is turning the power on and off (like compression and static and an accompanying sensation sound of powering down or powering up), and pressure and some vertigo and almost a shudder or "wobbly" sensation in my head at times that impacts my sense of reality/my cognition. My neck muscles and head muscles seem to have been recruited or irritated, causing me to have constant neck pain, sinus pain, and throat tension, which is really screwing with my singing voice (I'm also a professional musician and singer-songwriter... or, rather I WAS before this.) I now also have migraines, with aura and vertigo, which have been confirmed by EEG. My MRIs have come back "normal" but SPECT scans (which confirm PTSD/anxiety brain) show that my brain isn't shutting down when at rest, in fact, it is amplifying its activity. I got my hearing tested and have been diagnosed with "slight" and "no" hearing loss (up to 8k).
Complications are a history of severe sinusitis and MARCoNS which I believe nested into my sinus after my sinus was broken when I was kicked in the face by a horse back in 1994. I was diagnosed with a rare genetic condition in 2007 after a long term illness lasting about 4 years, which shows that my body is unable to detox properly, so I was being "poisoned" by car exhaust, medications, flavorings, pesticides, body products, and even off-gassing paints and plastics in my own home, resulting in several weird poisonings like arsenic and aflatoxin (both potential ototoxins). I had to change my whole lifestyle and learn all about detox and our toxic world to compensate. In 2009 I got mild whiplash from a car accident, and was treated for a lot of headaches and neck pain. Maybe these relate, maybe they don't.
Fast forward to now, 2020: Concentration has become difficult, as has holding conversations, dealing with normal stressors, and sleeping is a nightly battle that I lose 85% of the time. I have multiple health issues with a lifetime of PTSD, anxiety, and several other neurological issues and health problems, so the upside is I've already been through tons of therapy and have a lot of skills from vagus nerve retraining and breathwork to CBT, mindfulness and yoga. The downside: I've already got all these skills, and while I can say they help, none are a silver bullet.
These life challenges have led me to becoming a neuroscience and wellness-obsessed nerd who has made applied neuroscience my profession (I've even launched my own wellness centers and have a business coaching people through all kinds of issues, including consulting for businesses on neuroscience and human behavior/performance), so I have studied a lot. I've even become a featured speaker and influencer, for example I will be giving a talk on applied neuroscience at a UN conference in a couple months. So I have a ton of education about how to manage stress and the brain and how to address issues like this.
I'm just pointing this out because tinnitus is a bitch, no matter how much you know about it, and despite having a lot of education and tons of skills, it still eats me at moments, like a giant Tinnitisaurus-Rex! The fact I already have everything that normally "helps" means maybe I've capped off my own capacity for self-management, which can make the future look like a bleak place. Like all of you, I find myself managing, planning and orchestrating my day to avoid potentially becoming tired, or stressed, or having silence, anything that will stack the tinnitus cards against me. I feel like I'm constantly building a house of cards that I must balance on top of, in order to avoid falling deeper into tinnitus hell, to a place I fear I won't be able to manage my reactions or desperation to find relief. I'm not a depressive or suicidal person, but when I hear of suicide cases from tinnitus sufferers, I get it.
I've tried every variety of psychotherapy, and things like vagus nerve retraining, THC/CBDs, GABAs, phenibut (honestly one of the few things that helps me sleep and relax), detox therapy, diet change, Ginko (ARCHES formula), Fatty acids (EFAs) and supplements for the brain and nervous system, blahblahblah. Like many people on this forum, I have been to about 100 doctors and tried just about everything that makes logical sense. I can change some of the sounds by changing my blood pressure significantly, or tensing the muscles in my head and neck. But, overall, it just slowly gets worse, like a leech who is latched on to me, and is consuming a little more of my life every day as it grows and grows. Haha! F*ck the leech! I still have most of a life left!
Luckily I was blessed with a naturally optimistic personality who tends to find ways to turn lemons into lemonade. That is really the thing that saves me on a daily basis. I just can't be bothered by letting it get me down for too long. My depression is not interesting to me - it is predictable and boring and repetitive. Sure, stand at the precipice of the abyss, notice you have slipped off the edge and are falling downward, do some screaming and flailing around. But the fall is long, so you might as well find something positive to do in the meantime, right? So I get bored of feeling down and find something better to do, albeit with headphones on. In some ways, tinnitus has caused me to become even less patient with my own negativity. I get pissed off at myself: "Look, lady, your life sucks with this sh*t, and there is not much more you can do about it, so you better not make it suck more by getting your panties in a bunch! Get up. Go outside. Help someone. Your attitude is just making yourself miserable on top of being the unfortunate winner of a sh*tpile of bad luck. One bad situation you can't control, but the other you can. Knock it off!" Life is short! Do something to make it worthwhile before you find the end of the fall!
So, I can't be sure if the head trauma was causational, corollary or unrelated, but the head trauma matches the side where the tinnitus started, and my brain scans have shown some probable TBI (traumatic brain injury). But my suspicion is that my brain's previous issues (multiple undiagnosed TBIs, PTSD, anxiety and limbic system dysfunction) have caused me to experience "recruitment", where proximal neurons become irritated and become recruited into the malfunctioning brain activity of tinnitus, causing the pattern of tinnitus to "grow" and expand throughout more tissue. I think of my brain as being "leaky", where the signals migrate from one area to another, and cause more neurons to synchronize up with the ringing. Not exactly a scientific picture, but it helps me manage my emotional landscape.
I read the forum a couple times a week, and I am so grateful for everyone's supportive and expressive sharing, and for all the feedback on potential therapies. This has helped me maintain my sanity, and clarifies my research and my own healthcare map, and my heart goes out to all of us who suffer and struggle with the daily challenge of overcoming our own brains. My purpose in life is to study and explore how we might do that, and hopefully, someday we will have better answers.
Tinnitusfully Yours,
Colette
Member
