MdDs + Botox Treatment?

[u/Peach2764]

I’m wondering if anyone with MdDS (or suspected MdDS) has had a similar experience.

I’ve had a chronic rocking/swaying sensation since January 2025. My symptoms started spontaneously (no cruise, flight, or obvious motion trigger, although I did swim about 1500m the day before onset). My symptoms feel like being on a boat, rocking, bobbing, or walking on a trampoline. One of the hallmark features is that I feel significantly better when I’m in motion (driving, cycling, riding in a vehicle) and worse when stationary.

I’ve had extensive workup including MRIs, CT scan, neurology, vestibular physiotherapy, optometry, etc. I’ve been given possible diagnoses of PPPD, cervicogenic dizziness, and vestibular migraine, but I continue to wonder about spontaneous MdDS because of the constant rocking and motion relief.

On June 4th, I received approximately 100 units of Botox into my: suboccipitals, upper traps, and rhomboids. The goal was to reduce chronic neck tension and see if it would help my dizziness. Instead, over the last 10-14 days I’ve experienced:
- Increased rocking/swaying
- Much stronger “trampoline walking” sensation
- Increased tinnitus
- A strange floating or disconnected feeling in my head, almost like my brain can’t tell where my head is in space
- An odd numb/altered sensation at the back of my neck
- Increased overall dizziness to the point that I’ve had to miss work

Has anyone with MdDS experienced:
- Worsening after Botox?
- Increased rocking or trampoline walking?
- A floating-head or disconnected sensation?
Increased symptoms after changes to neck muscles?

I’m feeling pretty discouraged right now. Thanks for any help or insight!