Has anyone heard of persistent postural perceptual dizziness? I am desperate for answers!

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I was searching online of vestibular issues and I came across something called persistent postural perceptual dizziness. And it sounds exactly what I feel like, I get a weird motion/dizziness feeling when I'm up, my eyes bother me and I rather lay down because it's not so bad. My eyes can't focus and with lots of movement things get even worse. Light bothers my eyes, my ears ring. I feel horrible and I'm trying to figure out why I don't feel good lately, it's ruining my life. Is been over 3 months and I haven't felt better in months. Anything can help.

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  • Posted

    Your not alone. Are you taking any medications ? Not for the dizziness just in general for other things.
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    • Posted

      Have you heard of what I asked about the name? I wanted to know if it's just a made up term basically. Your other response to me says its waiting to be moderated. Incase I don't respond about that part yet. No I, not on medication, I use to take adderal but stopped taking it months ago. Why do you ask? 

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    • Posted

      I cannot say I have heard of it exactly but to be honest there are so many terms used for your symptoms. I have had these symptoms along with many others for more than 3 years now. My current diagnosis is migrainouse vertigo. Also knows as MAV migraine associated vertigo. I feel it is a term used when they cannot find any evidence in tests to diagnose correctly.

      I asked if you were on any medication as medication can have similar side effects including withdrawal from some medications.

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    • Posted

      The doctors believe my dizziness started with vestibular neuritis and have since progressed to migrainous vertigo
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    • Posted

      I have tried betahistine, cinnarizine, gabapentin, amytriptyline, nortriptyline, propranolol. No luck as of yet. I see a specialist every 4 to 6 months.
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    • Posted

      When I see the specialist ( ent neuro-otologist) in 2 months time they will try another medication. Hard for them to find a medication that is safe to take along with my mental health medication which makes things more complicated.
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    • Posted

      I take paracetamol and ibuorofen daily due to the headaches and head pressure. It sometimes helps a little if I am lucky.
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  • Posted

    My post waiting for moderation was a link to vestibular dot organisation with information on

    persistent postural perceptual dizziness. You have probably read this info already.

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    • Posted

      I too feel my offending ear is my left ear. I get earache, ear pressure, hyperactivity and mild tinnitus.
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    • Posted

      Did they test you for neuritis? And how did you get that? Were you sick? How do you work when you have this? I can barely function. But I was told I don't have neuritis. Do you get a lot of headache? I'm going to try nortriptiline. I want to see if that helps me.

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    • Posted

      The gp (doctor) diagnosed me with vestibular neuritis by the symptoms I was telling him. It took 6 months or more I think before I had tests at the hospital by which time my symptoms were getting worse not better. All tests came back clear except when they made me lie backwards quickly I has some nystagmus in my eyes. I was very overweight and went to the gym. I only did 5 mins on the exorcise bike and 5 mins on the cross trainer and I was very sick for 2 days dizzy vomiting. I made a recovery but a few weeks later I sneezed and I have been dizzy ever since. I have headache every day and about 4 times a month I wake with a huge headache that lasts a day or 2. Yes nortriptyline seems to be very popular and has helped many on here. It can take up to 6 weeks to see improvement on nortriptyline. It gave me high blood pressure and palpitations so I had to discontinue it I am sorry to say. I have read that someone on here was given blood pressure tablets to counter act these symptoms. I am waiting to explain this to my doctor so that I can give nortriptyline another go.

      Best wishes

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    • Posted

      Tinnitus is very mild. It is mainly in the evening when I settle down in the quiet. The hyperacusis is always there. Sometimes it is unbearable. I feel like I am super human when it is at it's worst as I can hear the slightest sound. It makes my ears rattle.

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    • Posted

      Surgery runs a high risk of losing hearing in the offending ear. The NHS and doctors here would never put me forward anyway. It's been a long drawn out process the past 3 years to get where I am now as regards to seeing a specialist every 4 to 6 months.

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    • Posted

      I was told that there is no way to prove vestbular neuritis and vestibular dysfunction. I have have read that they can prove it in post mortem though. Not willing to die to prove a point lol.
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