Does anyone with PPPD experience this when closing their eyes?

Symptoms 🌡
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Hi everyone,

I was recently diagnosed with PPPD by an ENT specialist. I also have Generalized Anxiety Disorder (GAD), and I have started vestibular physiotherapy and CBT.

I’m wondering if anyone here has experienced symptoms similar to mine.

My main symptoms include:

  • Feeling like I’m walking on a boat or floating.
  • A heavy-headed feeling almost every day.
  • Feeling like my body is drifting slightly to the left or right when walking.
  • Sometimes I feel unsteady even though I’m not actually falling.
  • Supermarkets, shopping malls, and busy visual environments can make me feel worse.
  • If I don’t sleep well, my symptoms become much more noticeable.
  • Sometimes I feel mild nausea without actually vomiting.
  • Occasionally I feel pressure or fullness in my ears.
  • My symptoms seem to fluctuate. Some days I feel much better, and then suddenly I have a bad day again.

The symptom that worries me the most is this:

When I’m lying in bed and trying to fall asleep, as soon as I close my eyes and begin to relax, I sometimes suddenly feel like my body briefly rocks, sways, or spins for about one second. It immediately stops when I open my eyes or after a moment.

Has anyone with PPPD experienced this exact sensation?

Did vestibular rehabilitation or CBT help improve it?

How long did it take before you noticed improvement?

I’m trying to stay positive, but hearing from people with similar experiences would really help me.

Thank you so much.

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I was diagnosed with MAV (“Migraine Associated Vertigo”) before PPPD was even a possible diagnosis, and I can relate to all your symptoms, which I’ve personally experienced at one time or other. I will be amongst the majority here that also have.

btw, @sinneesl, welcome to the forum, I hope it’s useful, and good luck with your recovery journey!

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All of your symptoms are familiar to me. I believe most/many of them are typical for VM/PPPD sufferers. You’re certainly not alone, unfortunately.

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Hi, I have vestibular migraine and can relate to the symptoms you describe. I believe it’s over-reliance on our eyes due to the vestibular system not working well that makes us more dizzy when our eyes are closed.

Have you got a diagnosis for what caused your PPPD? I believe it’s usually a secondary diagnosis, meaning there’s a condition that’s caused it in the first place? Have they looked into vestibular migraine? It’s vastly under-diagnosed yet very prevalent. Treatment is migraine preventative medication first usually and vestibular physio later on, when migrainous activity has settled. I have recovered from constant dizziness before in this way. My neurologist described doing physio too early on as “building sandcastles on a beach.”

I didn’t need physio, once the migraine had settled I was able to recover my balance.

CBT (or any other kind of therapy) is always helpful I think to cope with the psychological impact of having a vestibular disorder.

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I have had the symptoms you describe. I have VM. But the interesting thing is that in the past I definitely felt like my body was rocking or moving when my eyes were closed (stopped when I opened my eyes). I thought my body was playing tricks on me and never told anyone about it. It’s strangely reassuring to know that someone else experienced these things and I wasn’t going crazy.

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