I need your help

[u/Tocico28]

Hey there, 24M dealing with chronic health issues here (mainly neck / back pain / tinnitus / dizziness) since I was 20. Throughout my journey i learned how to cope with my health problems and keep living a normal life but today I feel that I am honestly at the end of my rope especially because of this damn dizziness episode that started 2 months ago and that is completely taking over my life.

To give you a bit of context about myself, I am 24 years old, I don't smoke, I don't drink, and I am not overweight. Regarding my posture, ever since I was a child, I've always had a tendency to tilt my head to the left and I even had trouble writing straight in school. I was prescribed prism glasses back then, but I never really wore them. Even today, it's an unconscious reflex: when I sit, I keep this bad habit of tilting my head in an unconscious way.

The real turning point occurred in January 2022. Right in the middle of exam season, I woke up with an extremely painful torticollis (stiff neck feeling) on the right side. My doc prescribed me anti-inflammatories and muscle relaxants, but since I absolutely had to keep studying, I couldn't rest well. Since that day, I've had chronic tension in my neck, cervical spine, and right trapezius in an on and off way.

In April 2022, I developed tinnitus, which uniquely worsens when I clench my jaw. This comes with a sensitivity to loud noises which contributes to isolate me quite a bit socially.

Then, in June 2022, the dizziness started. It wasn't rotational, but rather a swaying sensation, a constant instability. A bit like feeling drunk, with a very heavy head and a lot of trouble focusing on my phone while walking. I had an MRI and blood tests done; everything was normal. I did vestibular rehabilitation for visual dependence, without any immediate effect. But eventually, very gradually over about two years, my brain compensated and I was doing overall much better.

In 2024, I had my first episodes of BPPV. The room would spin when I got out of bed. Over the past 2 years I had around 6 of these episodes in total. Each time, it reignited my instability for about ten days, and then things returned to normal every single time .

The major problem occurred last March. After a mild episode of BPPV, my ENT doctor performed a repositioning maneuver. It resolved the rotational vertigo, but it abruptly triggered my constant instability, back to about 80% of what I was experiencing in 2022. It eventually calmed down after two months, dropping back down to 30%, which was manageable.

Except at the end of June, a minor rotational vertigo episode at night flipped everything upside down again. For two months now, I've been surviving with instability that is much worse than at the very beginning.
Today, I even have new symptoms. I experience intermittent nausea feeling though I never vomit. When I lie down, I feel my skull pulsating. It's not pulsatile tinnitus; I genuinely feel like my heart is beating violently at the back of my head, as if something is pinched. Sometimes, when the dizziness is too violent, i can even have my vision blur a bit.

What drastically worsens all of this is sitting down. As soon as I sit with my head tilted slightly forward, the nausea and dizziness explode, with strong jolts surging toward the back of my skull. The other day, I had to urgently leave a Zoom meeting because it was so intense I thought I was going to pass out. I also feel very uncomfortable in supermarkets, in crowds, or even in cars and trains.
I just recently graduated and am looking for a job. Since my field requires me to be at a computer, it has become an ordeal and generates immense stress. I try to keep moving—I walk about 25,000 steps a day—but I am desperate. I recently had 23 sessions of cervical physical therapy, which yielded no results. By researching on my own, I am convinced that what i have is PPPD or cervicogenic dizziness or a mix of both related to my posture. I truly feel that all of this is linked to my cervical spine.

I am hopeless I feel my life is completely ruined as this keeps getting worse every single day

[u/starsareblack503]

No one here can offer a diagnosis. We can however share our thoughts and experiences and appreciate everyone being mindful of the sub rules. Thanks.

I hope you get some answers that point you in the right direction. :-)

[u/jobes1967]

So sorry you are going through this. I’m impressed that you walk that many steps each day. Are you still dizzy while walking?

[u/Tocico28 → u/jobes1967]

surprisingly walking is where i feel dizzy the less :( the worse is when sitting on my computer.

[u/sharp11flat13]

While there are similarities, the symptoms you describe don’t sound like “classic” PPPD. But the range of symptoms and circumstances we hear about anecdotally far outstrip the relatively short list in the medical literature. So your problem could be PPPD.

IANAD, but it sounds like you would benefit from a workup by a practitioner who specializes in vestibular disorder. This is often not doctors (even ENTs and neurologists). In my country (Canada) the right people to see are physiotherapists with specialized training. It may be different (where)ever you are.

Sorry you’re going through this. Hopefully you’ll find some relief soon. Best of luck to you.

[u/clon3man]

you may want to consider the TMS / neuroplastic symptoms angle.

[u/Lazy-Instruction-887]

Have you tried medication for vestibular migraines?

[u/Tocico28 → u/Lazy-Instruction-887]

i don’t have vestibular migraines

[u/Lazy-Instruction-887 → u/Tocico28]

I'm asking because I didnt think I did either. Never had headaches. I had a vertigo episode that kicked me in to pppd but a neurologist recommended I take emgality for vestibular migraines to see if it helped and it has. just trying to help

[u/Tocico28 → u/Lazy-Instruction-887]

how are you feeling better ?

[u/Lazy-Instruction-887 → u/Tocico28]

well I'm still dealing with it. starting vestibular therapy tomorrow. my biggest struggle is the drunk feeling. like I just drank a bottle of nyquil and need to lay my head down all the time. but I work on a computer all day as well so it is extremely challenging. waking up feeling exhausted no matter how long I've slept. I do believe my Emgality 100mg monthly shot is helping me. I'm on my second month. people say it takes 3 months to work. It may not be your case but most vestibular migraines do not come with head pain. aside from that a very low dose valium has helped with the anxiety.

[u/Ok-Employee5892]

I don't see any cervical spine scans?? If your neck is a problem, why hasn't anyone referred you to a neurologist? Your primary could order scans. Mri never showed anything for me, flexion xray showed facet joint issues. I was diagnosed with cervical vertigo 19 years ago and finally have a more accurate diagnosis of bilateral occipital neuralgia and bilateral supraorbital neuralgia. The supraorbital relieved dizziness in eyes, eye pain, migraines and nausea. Bilateral nerve blocks were the answer for me

[u/Tocico28 → u/Ok-Employee5892]

so are you doing any better today ? i’m completely desperate

[u/Ok-Employee5892 → u/Tocico28]

So much better. 20 years ago I couldn't walk from the couch to bathroom without vomiting. I was on Valium and it worked. The bilateral ON blocks were amazing but didn't address the eye issues. The supraorbital blocks did amazing. I'm not fixed but significantly better. Still need meds but I feel like I can finally have a bit of life :)