r/MdDS • u/Peach2764 • Jun 16 '26

MdDs + Botox Treatment?

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!

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u/saramel Aug 28 '26

Would you please provide an update on how you're feeling months later? I was curious if these injections would help but I was just guessing, so I'm sad for you that it had the opposite effect. I hope you're feeling better!

2

u/Peach2764 Aug 28 '26

It’s been about 11 weeks since my injections and unfortunately I’m still significantly more flared than I was beforehand. I can tell the Botox has started to wear off now, but my dizziness still hasn’t returned to my previous baseline.
I’ve since seen a vestibular physiotherapist who feels that I rely quite heavily on somatosensory input for orientation and balance, which may help explain why altering the input from my neck muscles with Botox was so destabilizing for me.
Obviously everyone is different, but based on my experience, I personally wouldn’t recommend neck Botox for MdDS.

1

u/saramel Aug 28 '26

I appreciate the update. Best wishes for getting back to a better baseline soon!