The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

PPPD - what's the consensus here?

#21

I already had the TMJ. Intracranial hypertension was also floated.

#22

Yeah, with PCOS I also have a ‘gland problem’!

#23

It’s no wonder then we’re all dizzy. It’s because we keep going round and round.

4 Likes
#24

What about ‘floating woman syndrome”. Let’s not miss that one out. Might be important.

If MAV didn’t make us all feel so very ill, the whole situation would be laughable. As it is really it’s pathetic in 2018 but there’s far more interest in putting men on Mars, or peering into Black Holes than in MAV research. More likely to grab headlines maybe.

#25

omg, it’s worse than i thought! :smiley:

#26

Pugg, I get those exact symptoms and I’ve been diagnosed with MAV & Hydrops. I no longer get vertigo, but I go through phases of fluctuating disequilibrium.

I noticed on the run-up to me going fully chronic I would get dizzy for a few seconds when stressed. This to me was a sign of building Hydrops in my bad ear.

In my case I’m fairly certain my case is Hydrops as I injured my bad ear.

I agree with @Getbetter, you should focus on remedy.

I would strongly suggest you follow the MAV diet and exclude caffeine for a bit to see if it helps. Also consider dropping chocolate.

#27

OMG what a great group of people you are! I especially appreciate the levity because we all know that dizzy is not a fun place to be. I’d respond to you each individually but spending too much time on the computer is probably the thing that most sets me a-tiltin’ so let me just thank you all for the responses and the humor and the good advice. I’ll be getting back the blood lab results in a couple of weeks so maybe I’ll discover allergies or hormone issues, etc. all of which might help me understand what’s going on, although it’s clear that for most of you who’ve been going through this a long time that I shouldn’t (and don’t) expect any definitive diagnosis and whatever diagnosis I get I should be prepared for it to change depending on what doctor I am talking to. And it’s true that I may try to avoid too many opinions and just find something that works, until it doesn’t, and then try something else. So far it seems I am able to control the dis-ease with vestibular suppressants like meclizine (“less drowsy” 24 hr. dramamine) and ginger (“all natural” dramamine) and the occasional micro-dose (less than .25 mg) of xanax (weird but x really seems to stop my tinnitus completely). The CBD oil helps me sleep and with my anxiety but I will say that, though supposedly not psycho-tropic, if I use too much (I prefer the fast results of vaping) it can make me a a bit wonky and causes major munchies. I’m gonna ask my new doctor if there is a better alternative to benzo’s 'cause I don’t want to get hooked on that heavy stuff.

Whatever we end up calling this I feel certain that you all will continue to help me know that I am not just some crazy ol’ codger looking for excuses to the realities of aging!

CHEERS!!!

1 Like
#28

Your symptoms are exactly mine and was diagnosed with PPPD last November. I’ve been suffering from VM for two years now. Have done Vestibular Physical Therapy, Gabapentin, Amitriptyline, Effexor, Buspirone, and Valium. Seeing a psychologist currently and wasn’t surprised to find out many people who suffer from PPPD have had problems with anxiety/depression before coming down with symptoms.

Have you been working?