Weird as f*** Story Just Like My Life

I'm truly grateful that I'm finally among people who understand. Even though what I believe caused my T is a chain of terrible / weird life choices and lifestyle (unlike many of you who did nothing to deserve this torture) we now share this unfortunate companion and I hope we grow stronger together in our quest to overcoming it. This is going to be a tl;dr and I apologize for it. I've marked the tinnitus-relevant part in red.

I'm 24 and live in Europe. Early this March I woke up with what felt like someone had squeezed my brain in the middle, with this dull, after-zap feeling spanning across its width. Any sharp noise or head movement would make it worse. I thought my brain simply wasn't getting enough blood from the way I was sleeping (face down, on top of a pillow, neck compressed), so I turned around and forgot about it.

For a year straight (early 2015 - early 2016) I hadn't gotten out of bed, always with my laptop on top of my stomach, hunched forward, malnourished and drinking beer / wine every day. It wasn't always like this. I studied abroad and held several jobs, had an active social life, then returned home to chill and complete my BA thesis in peace, for which (throughout the year in question) I was failed 3 consecutive times. In the beginning of February I developed dry / blurry vision in my right eye. In the beginning of March I started feeling weird sharp pain in my upper and lower back teeth (left side) upon chewing food. Got checked out by a dentist - no cavities or visible cracks. Just sharp pain (but bearable) upon chewing any kind of food, with each bite. Thought it was stress as I've had similar pains during stress before, thought not as intense.

On March 28 I was trying to fall asleep to a past-life regression video (link) just for fun. Well, I woke up halfway through it from what I now believe was a bout of hyperacusis. The next day I was totally fine, chilling, having fun, drinking an entire bottle of homemade red wine. Two days later I woke up with what felt like someone had squeezed my brain dry of any liquid. It felt like I had really bad fever, felt dizzy and drunk. I felt like I wasn't 100 percent myself, like I was actually caved in deeper in my head, looking from behind my eyes. It's difficult to explain, but imagine being drunk and having high body temperature.

I went back to sleep for a bit more and woke up even worse. Once again I was on top of my pillow, chest and neck compressed against it. I didn't even think about a hangover. I've had many and it didn't feel like one. When I got up I felt extremely light-headed and had balancing issues. Thought I should eat something and it'd go away. It didn't. I was already shaking and panicking because it had been an hour and this feeling kept persisting. As I booted up my laptop I realized I was losing feeling in my left arm and felt extremely dizzy. I thought I was having a heart attack so I called an ambulance and the doc checked me out (BP, chest) He said "lol ur fine m8 probably stress".

The feeling didn't go away. I tried to fall asleep at night but kept waking up in "shock-waves" - the kinds that PTSD veterans get when they get traumatic flashbacks (sorry if this offends anyone, I'm bad at comparisons). Later during the night I was awakened by what felt like my heart pumping out acid. It was a very painful, strong feeling in my chest, so I couldn't sleep. I was convinced I was getting these symptoms because of a failing heart. I was getting 120-130 beats per minute no matter lying or standing, so I went to my GP first thing in the morning. She had an EKG and blood work done on me in the days to follow, which came back normal - no blood problems, no anemia, no critical heart issue, no thyroid issues.

This is where my Tinnitus started

I can't remember much because of the stress, but I was getting daily panic attacks. One night I was just at home by myself reading a book when I started hearing the standard high-pitched ringing noise in my right ear. It didn't go away after an hour so I knew s**t had hit the fan and that there was probably no going back. It was and still is worse at night, especially the hyperacusis. I can hear my T with my headphones on full volume if I listen closely for it, I can hear it over the fridge noise, while in a car, and have the ear fullness feeling almost all the time. If the fullness and hyperacusis goes away I can say for a fact that I can definitely deal with it, even if it sticks. It has gone from a high-pitched sound to more of a "dispersed", less piercing sound, so it's not as irritating now. Was it noise damage-induced? Perhaps the ear is more sensitive and fragile during a hypno-session, in a hypno-state - the one I had a week earlier?). Maybe I damaged my hearing and the tinnitus showed up a week later? Perhaps it was the stress? The latter is what everyone around me thought. I feel like all my tendons and nerves are borderline stretched out, on alert and hyper-stimulated. When I'm anxious and I tap the inner side of (just behind) my elbow bone I can feel an "electrical" surge in my fingers, the one you get when you have a panic attack but you think it's a lack of blood flow when it's actually stretched out nerves / tendons. When I'm relaxed and I tap it I don't get it, so I know my nervous system is always on edge for some reason. I just don't know.

Around mid-March I started seeing trails and negative after-images which last anywhere between 20 seconds to 2 minutes. My eyes seem to "lag behind" when looking right and left, they take a split second to adjust from double vision to a fixed point if I move them quickly. I became extremely light-sensitive. I was very cold-sensitive, feverish all the time (that's gone), had weakness in random limbs. felt dizzy all the time and would constantly bump into stuff in the dark. I feared the worst - Multiple Sclerosis, Meniere's, brain damage, etc.. I went to a neurologist who did the whole hammer-to-the-knee thing and diagnosed me with a "central otoneurological syndrome" (from what I've read it points to brain damage, trouble with / slow neuron conductivity, etc.) told me not to worry about it and gave me a prescription for Nootropil and a bunch of post-stroke medicine (vasodilators) for it. It's been a month and they haven't helped at all, apart from lessening the hyperacusis. However, when I was reassured that nothing serious was wrong, I had an entire 24-hour period where I was barely hearing my T and was free of symptoms, leading me to believe it's all anxiety-related.

Just a week ago I noticed new and very intense central floaters that swipe through my vision and blur the text. I've had a floater in each of my eyes since I was 16 which never bothered me, but the new ones do. Today I was trying some neck exercises to relax my neck muscles (read stiff neck muscles could lead to dizziness and tinnitus) and I ended up getting visual snow. I just don't know, guys. I've just started habituating to my T and the after-images, but new floaters and visual snow? F***!!! How much crap can a guy take on at the same time? The visual stuff scares me more than the T itself. Oh well.. I'm having a NMRI done tomorrow and I'll let you guys know how it went. Will do a Doppler ultrasound of my neck arteries too some time next week and post updates. Fingers crossed it's not MS.

 

Wow. You have been through much. I am 62 and got T a little over a year ago and later on the floaters. Long story short, it is scary to come down with these new health issues. But, I am learning to live with both and I am an artist. I try to count my blessings on good days but I still get frustrated on other days. When I realized T was not going to kill me and floaters were not going to blind me, I was ok. I adjust the lighting in my house to avoid seeing floaters, wear sunglasses sometimes watching tv. I did have severe dry eye before the floaters. I had a treatment called lippiflow which is not covered by insurance but it worked. I saw my eye dr last week and the price had been cut in half now. I paid $1800. for both eyes to get done. It felt so good. It is what it is. It does get better if you can challenge yourself not to let it get the better of you and still enjoy life. I wish you well my friend.

 

Hey Cantletgo!
Thanks for sharing your story and welcome to the forum.
to be honest, i believe (its just my opinion)
that your Tinnitus might be emotional/anxiety related...
has anxiety been a constant companion in your life?
in my case, i woke up one morning with my left ear ringing.
after 6 months of constant anxiety, i did the same i went to ER three times.
once i went to a bad bad doctor who told me i was having a pre-Stroke
so this just put my anxiety through the roof.
so yeah 6 months of torture, anxiety, panic attacks, checking my pulse every 5 minutes
and then... tinnitus.
i dont rule out hearing loss, because i have been exposed to loud sounds since i was 18, plus my ipod usage, music making etc.

but... your story reminds me a lot to mine, and i have read a few stories that sounds exactly the same!


ps around the first month i develop floaters too, but they did disappeared!

 

@cantletgo I seriously hope you're ok. Sounds like things aren't easy for you. I think it's best for you to learn meditation techniques to help calm yourself down, if your T, and other health issues for that matter, is related to anxiety and stress. Prayer helps too, no matter what your belief is. Just know we on this forum are always here to listen to whatever problems anyone might have
On another note, may I know what kind of neck exercises you do? I also have a stiff neck, possibly from the way I sleep, and I'd like to relieve myself of the pain that comes at times.

 

Update: I've gotten a barrage of tests, including thyroid tests, calcium, magnesium and vit. D levels, as well as Visual Evoked Potentials and a brain MRI with contrast (Neurologist suspected MS).

TSH was 3.30 (hypothyroid), very few antibodies (which points away from an overall autoimmune process in the body)
Calcium and Magnesium - perfect
Visual Evoked Potentials - slowed latency times in left eye, though they ruled it out as caused by mild uncorrected astigmatism (you're supposed to do the test with vision corrected + the equipment they used was ANCIENT)
Vitamin D - severely deficient (20 nmol when optimal is 70-120)

So at this point I'm freaking out that it's MS. Slowed VEP & Vitamin D deficiency + all the weird visual / sensory symptoms CLEARLY point to MS.

These worrisome results helped grant me a quick and state-funded MRI (only had to pay the contrast dye, God bless my Neurologist). Went and got this brain MRI with contrast which came back perfectly normal. So unless I have very early Primary Progressive MS (10 percent of MS sufferers) with 0 brain lesions and only spinal lesions (which occurs in only 5 percent of PPMS sufferers) then I think I'm pretty much the-most-terrible-condition-in-human-existence free and I gotta focus on that vitamin D. Went and bought D3 drops, spending a lot of time in the sun as of a few days ago. Hopefully the T will subside, but even if it doesn't I hope all the other symptoms will.

I've read that being hypothyroid can cause tinnitus, and being deficient in vitamin D messes up thyroid function + if untreated, a vit. D deficiency can even cause hearing loss, so there goes. I'll be updating you guys on my progress!

 

How are you now? I also have visual. snow.

 

To me it seems like 100% Neuro-Lyme if it's not MS or tumor.

 

@cantletgo

Any update?
I also have all of your symptoms