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PPPD - what's the consensus here?


#1

I am asking about PPPD, or 3PD, because some of the symptoms associated with it match my own and I’m never sure to what degree those symptoms are shared with VM and MD in others. Specifically;

  1. the chronic, more often than not (i.e. most days for the past 4 months) presence of non-vertiginous disequilibrium with varying degrees of intensity
  2. sensitivity to certain motion (which I’ve had all my life, was never able to do carnival rides) and inversely, absence of dizziness when driving or in a moving car
  3. sensitivity to visual motion
  4. acute sensitivity to precision visual tasks (computer work, reading) which provoke the dizziness
  5. sensitivity to large spaces like malls and grocery stores
  6. Symptom relief when lying down, symptoms are most evident when sitting upright or standing

ON one level PPPD seems to be the psychological effects that vestibular disorders provoke in those who suffer them, but apparently it’s not considered specifically psychological but rather the inability to adapt to the disorders. And yet it seems to be best treated with SNRI’s or SSRI’s which are anti-depressants.

To be blunt… could I have PPPD, or am I just crazy?


#2

My 2 cents

PPPD is a compensation disorder due to psychological elements like stress. It is kind of like PTSD which prevents compensation. Hence SNRI’s or SSRI’s are the only recommended class of treatments versus the myriad of migraine meds available for VM.


#3

Though, all those symptoms, with the notable exception of #6, match mine and I’m pretty sure VM is my issue.

I guess the question is are those the only symptoms you have, because VM has a lot more as well.


#4

Thanks GB. What confuses me is that I have worked hard at compensating and whereas I’ve always been a bit high strung, I never suffered panic and/or anxiety the way this has affected me. Indeed, I am already better at going to those places which only a month ago caused a lot of stress and once I realized that driving wasn’t a problem I’ve been able to get around okay. And yet those distinguishing symptoms, the persistent imbalance, the inability to work long at my computer, sensitivity to visual motion and to my own motion like head turning and the relief I feel when lying down are big parts of what I am going through and seem somewhat less symptomatic to the other vestibular maladies (at least as described in all the articles I’ve read) so it confuses me. I really don’t feel unable to compensate. I am moving forward. but those speciifc symptoms pretty much define my experience. Maybe they are present with VM and MD too? It’s hard to know what people mean in describing their symptoms sometimes so maybe that’s it…

I’ve read some rather dodgy things about SSRI’s amd SNRI’s , i.e. the drug trials were rigged to ensure their approval, that they didnt actually work better than placebos and have some rather scary side effects like suicidal thoughts. I’d hate to think they might be the thing to make me feel better, but then again if they work…

As you can see… I am confused…


#5

HI Emily… the symptoms that got me looking at VM and MD were specifically the sudden onset of acute disequilibrium (not vertigo, no spinning here - but I’ve had 7 or 8 of these attacks in the past 4 months while being vaguely dizzy most of the rest of the time), the loss of hearing in my left ear, aural fullness and tinnitus and visual auras usually associated with migraine like scotoma. I had only one migraine in my life, when I was twenty, but I had the visual stuff, without headache, all my life. My sister has suffered from migraines her whole life, so it’s in the family. I guess because the symptoms associated with PPPD are so specific and so present in my case it’s hard for me to ignore…


#6

I think your option is to seek a neuro-otologist. They can help you work out your inner ear diagnosis, though most of your symptoms sound like MAV. We don’t always get headache/migraine but get a lot of other things. There was a great presentation at this year’s World Migraine Summit by Dr. Godfrey that talked about how migraine can work along different pathways. Sometimes it’s the trigeminal nerve and mimics a sinus infection, sometimes it’s full ears and tinnitus, sometimes it neuropathy or IBS. Signals are scrambled. My personal symptoms vary from day to day. There are days when I can’t feel my hands or stay out of the bathroom. Then other days like this last week where my ears are totally stuffed.

None of the meds are side effect free. We are, after all, altering our brain chemistry and all the autonomic functions down the line. I have yet to read about a med that didn’t fall under suspicion of rigged trials and selective data reporting. Capitalism and lobbying are terrible bedfellows.

So far, I’ve tried several meds. The one that’s treated me the best is a low dose SNRI. I didn’t want to go there, either, but there is only so much dizziness I can stand.

I’m glad to hear you are compensating well. Keep pushing those boundaries. I am, too, but I still need the meds.


#7

Hi Chris,

Don’t get hung up on PPPD. There is one more called MDDS. If you ask me all these should fit into the same bucket as VM/MAV. You can start with Effexor or Amitriptyline as they will work for both MAV and PPPD.


#8

Thanks GB and f!!! Your knowledge, opinions and experiences are more helpful than you’ll ever know and I appreciate the scaffolding provided by it all. I’ve always found it hard to seek help outside myself, indeed, I avoided doctors all my life… now I need you all, frankly, don’t quite feel like I deserve it. With gratitude and respect!!


#9

Chris,

You’re one of us and we are here for you.

Emily


#10

Nice profile pic, Emily :slight_smile:


#11

That is so cute! Is that your dog, Emily?

Here’s my kitty:


#12

No, it’s my spirit animal. The labradoodle. I own a pug-a-poo and two cats, plus exactly one remaining fish in my office tank. My boy has a gecko.


This is Izzy being a messy camper.


#13

Ha! You are not crazy, tho my ENT might disagree​:wink::wink:

This is my take: I am 50. When I was 17, I started having quick spins. I was told bppv but with no testing. Then it got worse… Into exactly what you describe. But back then, no ear symptoms. I also had my first migraines with classical aura around that time. I went through all the testing. I was told I had anxiety and put on anxiety meds. They helped! So I just assumed I had anxiety for years… Over time, I’d get a bit of these symptoms but not bad. Anxiety meds fixed them up quick. Then abt 5yrs ago, started getting serious VM symptoms, hearing loss, fluctuating tinnitus, cluster headache, major spins. Saw ENTs, Neuro. They all said migraine. They also said my prior issues were most likely migraine, and that the anxiety drugs were also used to treat migraine! Go figure! So I started identifying these issues as migraine (which I still believe they are). But flash forward 5-6yrs, and PPPD is now all the rage! So new ENT now says, you don’t have migraine, you have anxiety!!! I guess history really does repeat itself, and what’s old is new! My point is, “diagnosis de jour”… The thinking has rounded back to “if psych meds work, it must be mostly psych”. PPPD is an anxiety issue having to do with compensation, but Dr’s are just calling it anxiety in many cases. Give it time… Soon we’ll be diagnosed with “subclinical epilepsy” or “smoldering MS”!


#14

Oooh, I want Smoldering MS!! If I get that diagnosis, I’m getting a tattoo!


#15

:joy::joy::joy::joy::joy::joy:


#16

Who’s being bad and not doing her job? That’s right, me. :smile:


#17

I’m tempted to bring that pix to my Neuro on thurs…

You can also add (things I’ve been told) spontaneous cerebrospinal leaks and TMJ :joy::fearful:


#18

@napagirl, I went through all of the vestibular testing in 1998 and the neuro-otologist told me that I probably had “vestibular neuronitis.” So that’s what I assumed I had, for the next 18 years(!), until 2016 when I went through all of the testing again. The 2016 neuro-otologist looked at my 1998 test results (I still have them all) and told me that there was nothing wrong with my ears/vestibular system back in 1998, there was nothing wrong with it in 2016, and that I didn’t ever have vestibular neuronitis. Then he said that back in 1998 they didn’t know about “vestibular migraine” yet, and that is probably what I had (and what he thought I still had in 2016).

My conclusion was that back in 1998, when they didn’t really know what was wrong, they just called it “vestibular neuronitis,” and in 2016 when they didn’t really know what was wrong, they just called it “vestibular migraine.” :roll_eyes:

Now, in 2018, after having read a ton of articles, and having been on this forum, I think there is probably something to the “migraine theory.” Or maybe it would be more accurate to call it a “neurological theory,” since they now think that migraine is a neurological phenomenon.

But it is incredibly frustrating to realize that, in another 10-20 years, we could all end up with a completely different diagnosis if they decide to throw the “migraine theory” out the window. :woman_facepalming:


#19

Exactly my point! They have their suspicions but no definitive proof. And btw, back in the 1800s, there are writings of Dr’s observing women with “vapors” (dizziness,fainting) as having migraine type of disease. The link was always there, always discussed. It wasn’t until late 90s early 2000 that the Neuro powers-that-be got together with the MAV diagnosis.

It’s my understanding that the thought of vestibular neuronitis as a virus is being abandoned. Now its thought to be an inflammation of unknown etiology. By the time I had my recent vng, I was almost back to 100% except for the “PPPD/anxiety/MAV”. At that point, my vng would be normal. He was ruling out Menieres, which causes permanent damage. Meaning- one could have vestibular neuronitis (now of unknown etiology), recover in days, be left with PPPD/ANXIETY/MAV and then have normal vng.


#20

Ha, ha, “vapors.” So that’s what we all have. I like that… :slight_smile:

Emily (@flutters)! We have “vapors!”