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

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? 

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.

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

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

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.

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

Sorry. Vestibular dot org.

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

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.

Is the tinnitus on going or does it stop and go?

I think they can do surgery for neuritis btw

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

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.

Thanks I will look this up

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.

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.