Possible PPPD, but with vertigo/disequilibrium worsened by limb movement
So I've been down numerous medical rabbit holes since April/May this year (2020) when I first started experiencing this weird rocking/swaying/falling/bobbing sensation (like being on a boat), and I was hoping someone else had experienced similar symptoms to hear their story. Other symptoms:
- Intense brain fog, especially when spending lots of time on the computer.
- Intense eye strain when the brain fog hits.
- The rocking/swaying/falling sensations would go away when lying down and being totally still for a while, but then would get intense when I moved my legs even just a little. Sometimes it could be triggered by pressing on the muscles at the base of my skull, but this was unpredictable.
- Increased anxiety over my symptoms.
- Within a week of the vertigo/disequilibrium starting, I started getting pins and needles and numbness into my arms at night, which woke me up every 2 hours. I suspect this was from neck tension from the anxiety and my brain trying to stabilize my head from the illusory motion throughout the day, because taking some muscle relaxants before bed immediately resolved the pins and needles.
- The only objective way of demonstrating that I had a problem to my doctors was to do a Romberg test for them, where the moment I'd close my eyes I'd be rocking and swaying and almost falling over.
- Occasional short-lived, but intense, headaches upon standing up quickly. Sometimes these result in a feeling of light-headedness for a little while.
My family doctor told me at the time it was most likely cervicogenic vertigo and recommended physiotherapy for my neck, and I went for about 20 sessions of physio with no improvement at all.
Testing I've had this year:
- A brain/C-spine MRI in July 2020 (normal; incidental finding of small bilateral Tarlov cysts in my C-spine, but they say these are usually irrelevant and asymptomatic)
- Tons of blood tests (e.g. testing for inflammation, B12 levels, signs of autoimmune diseases, etc.; all totally normal)
- Heart tests (ECG, echocardiogram and 72-hour Holter monitor; all normal)
- Carotid artery ultrasound (normal)
- Auditory/vestibular testing - this is the only abnormal result, where the tests showed signs of "left-sided superior vestibular nerve/utricle dysfunction". My hearing's totally fine fortunately. This last set of tests happened in August 2020.
My ENT specialist said that this could've been caused by a viral illness that attacked that nerve, but this doesn't really add up to me because I wasn't sick when this happened, and the vertigo sensations seemed subtle in the beginning (my understanding of virus-induced vestibular neuropathy is that, when it comes on, it's really intense, but mine wasn't at all).
After my testing, it lessened my anxiety significantly and by about September/October I didn't notice any more of my symptoms. They may have transiently occurred but it seemed like I was totally fine again and had a really good month or two. I could concentrate on work again and felt really productive.
Then, around early November 2020 sometime, I think I was on the verge of a panic attack (my partner was told that week she would most likely lose her job due to a COVID-related restructuring at her company, and we're relatively new immigrants without any close family nearby), and within the week after that my symptoms came back.
I then went to see my ENT specialist again and he seemed perplexed by my symptoms. He said it's possible that I have PPPD and prescribed a low dose of Venlafaxine to try out, but I haven't tried it yet due to the potential side effects and wanted to exhaust all the more conservative options first before trying it out.
So I recently restarted vestibular rehab with another vestibular physiotherapist, and have been doing all the exercises and have been improving on all measures (gaze stability, balance exercises), but my symptoms seem to be getting more intense over time. They now seem to be present when lying down at night, which is new. I also now get this rocking/swaying/falling sensation even when I move my arms while lying down, and sometimes even when I take deep breaths.
Could this possibly be PPPD? Has anyone else ever experienced this feeling of increased rocking/swaying/falling when moving their body?
If I do have PPPD, from my reading of the BMJ article on PPPD ("Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness", Popkirov, Staab and Stone, 2018), Figure 2 really resonates with me. I get this sense that my regular physiotherapy sessions earlier this year, where my physio kept prompting me to pay careful attention to which bodily movements trigger the vertigo/disequilibrium, along with my anxiety over my symptoms, have actually intensified the symptoms and made things worse.
Still, I don't understand what could've caused my superior vestibular nerve/utricle dysfunction. One of my theories is that it could be related to increased CSF pressure (long story as to why I think this), but it remains a mystery to me. One of my concerns is that whatever underlying process caused it is still ongoing, and I don't know whether or how to proceed with any further medical investigations.
Thanks for your response Cynthia! Yes, I've read up quite a bit about PPPD now, and it's starting to look like I don't actually have PPPD. Or that there's perhaps an underlying process that's still ongoing that's affecting my vestibular system (e.g. increased CSF pressure).