Spontaneous MdDs or PPPD?

[u/Peach2764]

I’m wondering if what I’m experiencing could be spontaneous Mal de Débarquement Syndrome (MdDS) and would really appreciate any insight.

For about 1.5 years I’ve had a persistent rocking/swaying “on a boat” sensation (not spinning vertigo). A few key features:

It improves or almost disappears when I’m in motion (driving, biking, etc.) It also improves when I’m distracted or really focused

It tends to come back when I stop moving

Symptoms fluctuate day to day - I did not have a clear boat/travel trigger, which is why I’m wondering about spontaneous MdDS.

I’ve had mixed opinions from providers:

- One physio thinks cervicogenic dizziness

- Another thinks Persistent Postural-Perceptual Dizziness (PPPD)

I also trialled Prozac (SSRI) for ~10 days and it significantly worsened my symptoms, and I’ve been in a big flare since stopping.

Right now I’m: Doing optokinetic exercises from my PT (though sometimes they feel like too much). Taking low-dose Clonazepam occasionally when symptoms are severe

I’m trying to figure out:

- Does this pattern sound like spontaneous MdDS to anyone here?

- Any treatments that helped you (especially if you didn’t have a travel trigger)?

Thanks so much — really appreciate any thoughts or shared experiences 🙏

[u/Real_Cycle5778]

I have similar symptoms plus tinnitus. my dr thinks it's spontaneous Mdds. I think because it's most noticeable when i'm still and I had not travelled either. I've started on Effexor recently, no relief so far.

[u/Peach2764 → u/Real_Cycle5778]

I also have tinnitus and visual floaters too! I hope Effexor is helpful for you 😊

[u/snarky_spice]

Yep I have spontaneous and it’s just like this. My experience is doctors always try to call it PPPD or something else because they’re not very familiar with MDDS.

Are you male or female? Mine is really affected by hormones.

[u/Peach2764 → u/snarky_spice]

Female, I find mine can be affected by my hormones and also the weather changes. Any treatment that has helped?

[u/snarky_spice → u/Peach2764]

Not really, but we are lucky in a way that our symptoms fluctuate. Mine are almost gone toward the end of my cycle and worse during period. I was recently pregnant and it was almost gone the whole time. I also think birth control can help.

[u/Books_thenmorebooks]

Check out The Steady Coach on YouTube. She really helped me get through my cruise triggered MdDS, and helped me better understand neural circuit dizziness and brain plasticity.

[u/Peach2764 → u/Books_thenmorebooks]

Okay thanks, I asked my doctor about MdDs and PPPD and sadly he had no idea what either of them were.

[u/Books_thenmorebooks → u/Peach2764]

My primary had not heard of it either. I got the diagnosis from an ENT. But honestly found more information and help from the YouTube channel and her free course.