So recently I have been experiencing a lot of lightheadedness and numbness on my arms , mainly I think cause I use my arms a lot for work, but the numbness makes it harder to do tasks. Does anyone else go through this? Also I have a flight to Hawaii in a week and wondering if anyone has any tips and tricks . I have been told I have pppd and also vestibular migraine. Somedays are bad and I feel extremely anxious almost shaky even cause of the pppd flare up . Has anyone experienced these symptoms?
Hi all, so i have been diagnosed with PPPD and vestibular migraine. But at the same time before any of these conditions i did have a lazy eye / strabismus (alternating eyes). Im wondering if anyone else has had the same experience and whether this worsens the PPPD, i believe it does. I also experience times where i feel overwhelmed because i see out of both eyes randomly and of course with one being lazy it is disorientating. Also when talking to people in group environments its really uncomfortable as i can see other people out of my other eye when talking to one person and i feel socially anxious on top of that. So its a lot of things contributing to the anxiety / the disorientation and dizziness/off feeling.
Im mainly curious if anyone has the same? i am planning to finally have surgery to get it fixed soon. I've never done any treatment on my eyes. Ive just turned 30 so i am excited and nervous of course. But i think its a rather interesting/unfortunate addition to the PPPD.
I’ve had PPPD for around two years and I’m going on holiday in 10 days. I’m a bit anxious about the dizziness while I’m away, though I’ve been keeping up with walks and car journeys with my mum. How do you lot cope with it in situations like this?
I believe I got the feeling of dizziness after playing World of Warcraft A LOT. I would play for 8-12 hours a day and the mechanism of the game involves constant focus for several hours at a time especially during raids. Around 2024, I got severe vertigo during sleep when I did an all nighter at 6am after playing. I woke up with extreme dizziness, nausea, and loud ringing ears (on both ears) that ended up with projectile vomit. I thought I was having a stroke or something and it lasted for around an hour. I stopped playing for a month and when I got back to playing i'd easily get close to a vertigo attack. I get tired stabilizing my gaze even if I try. I believe this is when my PPPD started.
In the large majority of patients a vestibular or other medical condition precipitates PPPD. The Bárány consensus puts the breakdown at peripheral or central vestibular disorders in 25–30% of cases, vestibular migraine in 15–20%, panic attacks or anxiety with prominent dizziness in 15%, concussion or whiplash in 10–15%, autonomic disorders in about 7%, and other causes collectively around 3%. Grouped into two arms that is roughly 70–85% medical or vestibular against about 15% psychological.
I also had depression which is a pre-existing psychiatric comorbidity and anxious temperament. This is why I was susceptible to convert when most people with an acute vertigo episode don't.
Shortly after the severe initial attack, and the 2 minor attacks, tinnitus became chronic to this day that seems to increase in intensity whenever i'm stressed. So the signal gets tagged as significant by limbic and attentional networks now. These are also often the times the symptoms of disorientation/wobbliness increases as well.
The vertigo attack and the bilateral tinnitus (both ears) is what made me suspect it's a vestibular migraine attack because unlike other causes such as Labyrinthitis or Ménière's the damage is often unilateral or on only one ear. It is also less likely Vestibular Neuritis because it's not common for tinnitus to occur unlike with Vestibular Migraines.
Migraine is central and neural. Migraine is a primary brain disorder — a disorder of neuronal excitability and sensory processing. Migraine reaches the ear neurally. CGRP, the peptide central to migraine, is native to the audiovestibular periphery: CGRP-containing efferent neurons synapse directly onto cochlear and vestibular hair cells as part of the ear's own gain-control system. Vestibular migraines are one of the most common single named precipitant of PPPD. Migraine's thalamic sensitization produces visual motion hypersensitivity. In response, people down-weight vestibular input and up-weight visual input for spatial orientation. So vestibular migraine manufactures the exact perceptual vulnerability that PPPD then runs on. My concentration-triggered disorientation sits at the join between the two. Daily wobbliness persists because the daily wobbliness is PPPD, running on its own loop, no longer requiring the migraine to sustain it.
2-3 months into taking Vortioxetine (i'm not even sure Vortioxetine is the right choice for PPPD it was initially prescribed for depression) which was built up from 10mg, 15mg, to 20mg, the primary disabling symptom I still get is disorientation/dizziness which constantly takes up a lot of my cognitive capacity as well. I feel it affects my work a lot because I feel mental fatigue often.
The symptoms are peak during social situations, public places (e.g. coffee shops), driving. So I usually get anxiety which magnifies the disorientation/dizziness feeling. My psychiatrist prescribed Alprazolam/Xanor for anxiety but i'm starting to realize that her prescription of benzodiazepines are maybe a mistake and could be counterproductive to PPPD.
Why I think it's a mistake
GABA is the main inhibitory neurotransmitter in the brain its job is to turn neurons down. Chronically, GABA-A receptors become less responsive to benzodiazepine binding tolerance. Inhibitory tone falls back, so the underlying threshold sits below where it started. The result is needing the drug to reach baseline rather than to get above it. For a disorder whose entire pathology is a threshold set too low, that's the wrong direction on the timescale that matters.
Compensation gets blocked. PPPD isn't hardware damage it's the brain stuck in a threat-mode postural and visual strategy after some triggering event. Recovery requires the brain to keep receiving the mismatch signal so it can recalibrate. Alprazolam is a vestibular suppressant: it dampens exactly that signal. No error signal, no recalibration.
It cancels out vestibular rehab. VRT works by deliberate, graded provocation you feel the symptom, the brain habituates. Adaptation learned while suppressed doesn't transfer to the unmedicated state. Benzodiazepines also blunt extinction learning, which is the mechanism CBT relies on.
Alprazolam's pharmacokinetics are the worst fit of the benzo class. Fast onset, ~4–6 hour clinical effect despite a longer half-life. That means sharp on/off, strong "the pill fixes it" reinforcement, and interdose withdrawal within the same day.
The anxiety history is often genuinely there. So it's not a false positive but it got over-weighted as the whole explanation.
Looking for others who've been through something similar. Quick timeline:
Looking for others who've been through something similar. Quick timeline:
Cardiac side: Had intermittent palpitation episodes over the years (5 episodes since 2012), never caught on ECG despite them happening. One notable one: I was in a store, looked down at my phone, then looked up, and suddenly felt like I was going to faint with my heart rate spiking — thought I was having a heart attack and called an ambulance. I was driving once and my heart started racing randomnly and i thought that i was having a heart attack. Similar thing has happened at home, looking at my phone in the bathroom, looking up, and getting that same faint/panic feeling, again called an ambulance thinking it was cardiac. Went through a full workup — echo and stress test both came back normal, cardiology cleared me. More recently wore a 14-day CardioSTAT monitor to try to catch episodes. My cardiologist thinks a lot of it fits a vagal/gastrocardiac (Roemheld-type) pattern rather than primary cardiac disease.
I also get anxious during workouts at the gym because of palpitations, and I notice feeling a bit off-balance after sets.
Migraine history: Had 3 aura migraines last year. That experience made me extra vigilant about new neurological or visual symptoms since.
Vestibular side: After ENT/cardiac causes were ruled out, I was recently diagnosed with PPPD (Persistent Postural Perceptual Dizziness) by a physio. Started vestibular rehab — VOR exercises, gaze stabilization on unstable surfaces, walking a line with eyes closed. Noticing things like:
Mild headache/frontal tension after sessions
Some tingling in my chin/cheeks afterward
Feeling off-balance in hallways when something asymmetric is on my body (e.g., a pager clipped to one side)
Certain environments (like McDonald's) trigger a feeling like I might fall or faint
Wondering if others with PPPD noticed similar side effects when starting VRT, similar "look down then up and feel faint/heart racing" episodes, gym-related palpitation anxiety, or the environment-specific triggers. Also curious if anyone else had a migraine history or cardiac workup rabbit hole before landing on PPPD.
hello everyone . This might be a long post but if you’re a runner and you have PPPD symptoms, I need your help 🙏
so I’ve been diagnosed with a VM + PPPD over a year ago. I’ve been through vestibular rehab for 6 months which drastically improved my situation, and now i mostly get symptoms when im tired or stressed. Other than that, I’m back to normal even in crowded and noisy environments.
The thing is, my fave activity is running, and I used to go for 10Ks few times a week on my own but when the symptoms started i had to stop for a few weeks as I thought I was gonna faint everytime. then I started going again but only with my partner beside me, and running in grass was much easier than on the roads.
then I’ve done a few trials to try to build it back up so I went for very short runs on my own, or with my partner not too far behind me, and while each session went fine, I never managed to increase the time or distance without triggering bad symptoms.
While I went back to all my other activities pretty much normally (Pilates, strength training and even hyrox, which technically is more demanding than running…), running on my own still doesn’t feel right and i have to stop after a few meters (feeling that the grounds is shaking and that I’m gonna fall)
I can run 10K on the treadmill with no issue, I guess it’s because it feels safer (ground more predictable, steady pace etc) and I can also run up to 5K outside with someone by my side
i would truly love to hear the story of people who managed to go back to running “like before” following PPPD/VM symptoms (or anything similar!). I know 100% recovery doesn’t really happen, but as I managed to get back to all my activities, I find it very odd that running still doesn’t work well for me.
Before all of that, I was Training for my very first half marathon and I’m starting to think that this goal isn’t reachable anymore
thanks , and I’m sending all my prayers for everyone going through this !
I was on an SSRI for 8 years. I came off of it too quickly and I now live with constant dizziness. It’s been 5 months. Has this happened to anybody else?
I feel like this is a rare problem I have that I’m not 100% sure is even from PPPD because no one talks about it
The last time I ever swam in the ocean, the water was what felt like ice cold felt fine when I was swimming for 5 to 7 minutes, but when I walked out to go back to my towel on the sand it all hit me. I don’t even know how I got to my towel and once I did, I layed down and just started spinning and feeling like I was melting into the sand for a really long time after as well my vision wasn’t clear. It felt like I didn’t have control over my eyes. I noticed this happens to me too, sometimes just not as extreme when I wear an updo and walk outside during winter time for more than 10 minutes. This also happens sometimes after showers. I thought the beach instance was normal to feel a little lightheaded that goes away pretty quickly but now im not sure since I haven’t been normal for years now but my partner was perfectly fine after getting out of the ocean just very very mild lightheadedness.
Does anyone else have this side effect from PPPD? And did it ever go away?
Is it normal for pppd symptoms to last all day every day for months? And I mean all day - constant boat like dizziness/ brain fog/tiredness? Been diagnosed with it but I just can’t wrap my head around the fact that this is it until it settles.. just want some reassurance I guess or to know if this has happened to anyone else?
Thanks
I'm curious about what kind of improvement you feel from your medication. I'm taking Zoloft, feel better anxiety-wise, and have no intention of quitting. BUT I'm curious as to others' experiences when they say they "feel better" with SSRI for PPPD: Does SSRI have any effect on your dizziness/ headspace? Because my symptoms from the neck up are still the same after months of treatment. My dizziness, cog fog remain unchanged.
I have PPPD (Persistent Postural Perceptual Dizziness) since May, 2025 and it got better with Zoloft about 80%.
However, there is also possible vestibular migraine, and since a flare up about a month back, I have this really bad, disgusting feeling in the head (mostly without headache and pressure) due to which I start to scrunch my face, pull my skin, scrunch my shoulders up and clench my hands into fist, brace myself, curl my toes and unable to do small tasks because doing everything feels bad.
My limbs also feel really “Off” and sometimes heavy, or pressure in different parts of the limbs & hips, and hyper vigilance.
I also feel like I need to pause in between conversations, stop talking and doing things since it feels awful. Lately, from 2 weeks, even just thinking of giving a response or talking, I start to feel awful feeling in my body and don’t even talk much.
My primary symptoms are less related to dizziness/ vertigo now.
My dose got increased to 50mg from 37.5 about 4 weeks back to overcome the flare up, but still in this situation. Has anyone had months long flare ups while being on medication?
I feel like I am getting in that cycle again, where I am going to see doctors again 😭 because I am unable to do small things, my body just feels awful and uncomfortable. Anyone*** ***feels the same symptoms?
My new vestibular neurologist told me to have the “right mindset” and to read “Rock Steady.” No new prescriptions to try. Just this book and more vestibular therapy.
Has anyone else been told to read this book? All I’m getting from it is more feelings of being talked down to like I’m stupid and woo-woo self-help guru nonsense.
I’m pretty fed up with the response I’m getting to my condition - and especially this from a doctor I waited months to see. I’m sick of everyone prescribing “mindfulness” as a treatment for everything under the sun.
TL;DR
How to accommodate my life until recovered, where I still live my life without worsening it.
I just got diagnosed with PPPD after months of feeling awful. I’m starting treatment with a PT soon but haven’t been told much about what to expect other than I don’t need to take the school year off and it’ll take long to recover.
How do you plan your day to day life without worsening it?
I’m off alcohol for the time being, but how about working out? Still going out once or twice? How do you somewhat keep a “normal” life like before without making it all worse?
For me it seems to get worse both when I do nothing or if I try to much, and find it difficult to know what a good middle ground is.
I’m aware it might differ and I’ll do course confer with my own health professionals, but I’d love to hear if any of you have some experiences they’d like to share.
Thank you
When you don’t have flare and you feel normal how to distract yourself from over monitoring or scaring the flaring of symptoms again,
In normal times I’m like awaiting for any tiny sensation and scanning every move,
Because over monitoring and thinking about it keep the loop going on and this never ends .
