Are accurate diagnosis possible?
Because it really feels like they aren't. I've had constant dizziness or vertigo for 2 years now along with visual snow. And before that I'd had it intermittently for 2 years. The first 2 years they said that I had BPPV (Benign paroxysmal positional vertigo). And then when it became all the time, they said I may have spells of that.. but that isn't what it is now. MRI's of my head are clean. Eyes are good. Ears are good. For the past two years the only reason for it I've gotten is that my inner ears are broken and a-typical migraines. Recently, the ENT I saw told me that this is likely permanent now (every other doctor wouldn't say it until now). She thinks I had a vestibular event 4 years ago and that it didn't heal right and 2 years ago it not healing right was too much and caused my current issues. She says it's PPPD (Persistent Postural-Perceptual Dizziness).
The thing is. I read up on that since leaving her office and that specifically says that the room doesn't spin. And the room most definitely does. Or I do and the room doesn't. Or it slants sideways. Or I feel like I'm still moving when a car comes to a stop. And I started thinking more about the appointment and realized there's holes in this.. because she definitely didn't ask me if I knew the difference between dizziness and vertigo or if I had pressure in my head/ears. She just said it's not Meniere's (but maybe you had that before and it's gone) it's PPPD.
I will admit I often say dizziness or vertigo and not both. I experience both. The room spins A LOT. But sometimes it isn't spinning and I'm dizzy. I don't know if that is because of my visual snow or not. And I may be reaching here... but after lots of research I'm thinking maybe it's both? Or is there something we're missing? Something that hasn't been considered yet?
I haven't driven or worked a "real" job in 2 years. I admit I have trauma when it comes to doctors so I have a problem speaking up for myself. I also forget to say things if distracted and let them dismiss things I say. I had a neurologist at the start of this 2 years ago try to tell me it was because of my weight and basically told me if my insurance denied getting tests there's nothing he can do because he's just "taking my word for it."
It feels like the doctors aren't even listening. Or aren't spending the time to look at everything. I say a few things and they jump to conclusions and suddenly the appointment is over and I don't feel like it was productive at all.
While I would never wish anyone to experience the symptoms I do.. I know it's likely people do and I'm hoping maybe one of you can give me some tips on how to get a more accurate diagnosis. Or maybe someone else had a hard time speaking up at the doctors and managed to do it and can provide ideas on how I can do that. I'd truly appreciate it.
Hi there. I'm so sorry you've had such a difficult time with medical care and getting answers. It's already such a complicated set of symptoms and then to have medical providers add to the confusion is just awful. I wonder if you have access to a balance clinic that can evaluate you completely. Usually you have to see a specialist who deals with vestibular disorders and will not dismiss your concerns. There are many options for treatments, so please don't give up. It sounds like you may need to see a new doctor to put all the pieces together. You do have some similar symptoms to Vestibular Migraine and PPPD. Have you tried Vestibular Therapy (PT)? That is one treatment that often provides a lot of relief. And often a vestibular therapist will be your best advocate. That is a physical therapist who is specially trained in balance disorders.
Seeing a vestubular physio may help you get a better idea of what you are dealing with. It took me 15 months plus seeing a vestibular physio and an ENT Dr. To get diagnosed with Menieres, PPPD+ 2others I cant pronounce and a 30% permanent balance loss. Dont give up the answers are out there.