Worth a read on a rainy day maybe. A very rainy day. It seems more about people’s reactions to it than the condition itself but i guess that’s what PPPD is - a reaction. I must admit I‘ve only read bits but they do just seem to scream undiagnosed MAV to me. All the excerpts I‘ve read would apply to any vestibular illness. PPPD may well exist as a separate entity but if these excerpts are typical, it’s effects are so similar to MAV it really must be almost impossible to distinguish. Helen
It’s very disappointing. All they seem to have done is put together a subset of the total MAV spectrum and called it something new. And it has the same medication? Pull the other one!
Come on medicine, makes some real progress on this, not just toy with definitions!
My sentiments exactly. It just adds to the confusion. We end up with variants of variants and sub types of sub types. It’s nonsense. I reckon it’s just done to make it look like somebody’s doing something where in fact they aren’t really bothering at all. Helen
I don’t know if anyone else feels this, but the diagnosis PPPD makes me angry, very angry. To me it feels like an advanced stage of doctors blaming patients (their anxiety, their flawed psychology, their avoidance of triggers) for their failure to make progress. Whereas the very essence of MAV is these setbacks, this eternal dizziness, this difficult treatment.
I’d never thought of it like that before but I can understand where you are coming from with that statement. Yes. Seems to me much like an admission that the doctors have messed up, missed some symptoms and are now recognising the result as a condition in itself whilst not taking any of the responsibility for previous lack of meaningful intervention. Understanding MAV and indeed being able to appreciate the potential psychological fall out of any vestibular condition I see it more as a logical extension of uncontained MAV for many people rather than a separate entity. Helen
I have read the article its really depressing especially the part which some sayong that they need to forget their old selves. Its really sad.
Yes - I agree with you (LucyLabrador) 100%. I graduated to the best at Johns Hopkins (Chief of Otology Neurotology, Otolaryngology etc.) and when they determined that they couldn’t find with high confidence the answer (imaging technology and science of these issues is not advanced enough in my opinion except in some easy to find flaws). - he had a Neurologist take over to treat for MAV. After trialing lots of drugs (and of course diet) with no success he decided that I had PPPD and recommended I see someone for that. Felt like he basically fired me and when I read about PPPD, I decided it was basically saying that its all in your head (which it technically true) and that you need a shrink to help you to stop thinking you have issues. Its basically what they say when they can’t fix you. Definitely feels like blaming the patient.
I was diagnosed with PPPD as well, and there seems to be a lot of controversy over if the condition is just another name for MAV or not. The only difference I’ve seen is that 3PD is triggered by some big event that throws off your vestibular system. Do you guys know of any other actual differences between the two? Definitely felt like doctors didn’t believe me as well because I didn’t (and still don’t) have the words to describe but it feels like, but this article did a pretty good job.
Great find Helen. I think, as with MDDS, its all in the spectrum of a vestibular conditions that might be triggered by or are part of migraine, since it seems that a big stressful moment is common across (spontaneous MDDS). The interesting part is the chronicity, and how long it takes to take control of it. And to make things just a little muddier, all three respond to similar meds.
Real progress such as below. Get this implemented as a lab test and targeted meds to fix the pro-inflammatory signatures.
2 posts were merged into an existing topic: Biomarker for VM & MD - This is a big deal!
Well it’s another very wet day. I’d climb the walks if I didn’t have this MAV stuff that is. Actually for those on the PPPD theme Gillian’s most recent comments telling.