New diagnosis by Neurologist: Functional disorder of nervous system

I'm sorry about your experience. Most specialists really don't give a shit about us. They get paid a LOT of money to rush as many patients through as they can each day. Hopefully, your primary will be more helpful.

 

Sounds like your doctor is saying what my latest doctor (a vertigo-migraine specialist) told me. He said it could be migraine, but spent most of the time saying it may be anxiety related. I guess when they're out of reasons, they grab for "anxiety". So he put me on 4 grains of Effexor.

Here is my post from last week on his anxiety angle, which relates to what you just posted.


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He thinks I may have PPPD. Persistent Postural-Perceptual Dizziness.

From what I can tell from my research, it's basically Meniere's but made worse by anxiety/depression/visual stimulus. It used to be called phobic postural vertigo PPV. Hense he prescribed small amounts of Effexor for me.

PPPD can co-exist with other vestibular disorders, such as Meniere's. So again, everything's complicated. And there are no tests for it.

Here are some symptoms of PPPD:

"Symptoms are typically worse with:
--Upright posture (standing or sitting upright)
--Head or body motion
--Exposure to complex or motion-rich environments"

So, no different than Meniere's then.

Again, to me, it just means your Meniere's/dizziness symptoms are made worse by stress/movement/busy visuals. We already knew that.

I'll keep taking the Effexor. I'll try anything.

Here's an article on PPPD

https://vestibular.org/pppd

 

Stop wasting time and $$ with the goof ball. They have their standard flow chart of treatment which you can google. When that fails, they tell you to get used to it.

 

My vestibular Physiotherapy guy also mentioned PPPD to me during my visit yesterday. He thinks that some of my ‘woop’ mini tilt feelings might be related to this process.

He didn’t make me feel like it was my fault, or my imagination. More like, it’s just a natural protective mechanism that our brains do, to try to avoid things that have felt yucky before.

So now, whenever I get that feeling, I repeat the motion - and on these repeats, I don’t get the same tilting sensation!

When I googled PPPD the first hit was a good, in depth article from
pn.bmj.com

 

I'm sorry you had such a bad experience, but it doesn't surprise me. That's what a lot of those so-called specialists do when they don't have an answer or can't fix the problem. When I first started having Meniere's symptoms I spent three years going from doctor to doctor tying to find out what was wrong and what could be done to fix it. I was repeatedly told that it was "anxiety" and handed a Rx for Valium. I experienced similar treatment from the last so-called specialist I saw. He couldn't be bothered with me. It's both demoralizing and dehumanizing.

 

California, your experience with the medical world sucks so bad.

I’ll just clarify my post - these mini-tilts I’m having are after 2 gentamicin injections. I’m not sure if they are leftovers from the Menieres, a side effect of the gentamicin, or related to this pppd idea.

My plan is to carry on with my vestibular rehab, gradually try to normalize my activities as best I can, try not to totally avoid uncomfortable visual settings. I’m already on Remeron which has some ssri effects. I will never again take an snri as Effexor withdrawal coincided with the onset of my Menieres.

 

Yeah, it really does. Right now I am in the place where I am desperate for some help, some relief, but I literally have nowhere to turn. This latest flare has gone on for 6 long months now. Sometimes it gets better for a little while but then comes back with a vengeance. I rarely leave the house anymore because I feel so bad most of the time. I have Kaiser so I am limited as to who I can see. I don't have the resources to doctor-shop, and even if I could, at this point there are no real answers out there so I can't imagine hearing anything different than I've heard in the last 45 years. After the last experience I had, I have lost all faith in doctors as far as Meniere's is concerned. I've even looked into volunteering myself for trials if there were any near me, but I wouldn't qualify anyway because of the surgeries I've had. I feel that I am completely out of options. I want my life back, and right now I am not living, just existing.

 

California,
If you decide, at some point, to give doctors another try sometime... I just want to encourage you that they are not all assholes. I’d say the ratio of ENT twits to ENT terrifics is about 5:1. When I saw Dr. House in LA, he was just so-so, but his resident who was a couple months away from finishing her training was absolutely wonderful. I’m a retired family doc, and I used to teach communications/history taking etc at the med school. So you can count on my opinion that this woman was stellar! Compassionate, complete history, willing to know my preferences and goals for treatment etc. If you want, I can try to find out her name. Or, just phone the house clinic and ask who was dr house’s “fellow” in February 2019 - a young, Asian descent female; and if they know where she’s working now.

Who knows, perhaps the universe will cooperate and she’ll be available under your insurance. If not, beg borrow and steal to see her, or one of the other fabulous doctors talked about here by other members like Bulldogs etc. If/when you’re ready, of course. If this is not useful to you, please ignore!

 

Thank you for the info.

 

It took 3 years and 3 ENT's before I found one that was actually thoughtful. Been with him since.